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Ehlers-Danlos Syndrome

July 15, 2009

The Scams Just Don't Stop...

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

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

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

Danlotab2

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

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

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

Bastards.

Anyhoo... back to Danlotab:

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

Its unbelievable, isn't it?

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

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

A lot more, unfortunately.

June 09, 2009

Setting Goals: The Reading List

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

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

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

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

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

Cool.

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

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

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


A

Anna Kerenina by Leo Tolstoy

Atlas Shrugged by Ayn Rand


B

Blood Meridian by Cormac McCarthy


C

Cat's Cradle by Kurt Vonnegut

Crime and Punishment by Fyodor Dostoevsky


D
Dracula by Bram Stoker


E

Enders's Game  by Orson Scott Card


F

Frankenstein by Mary Shelly


G

Germinal by Emile Zola

The Grapes of Wrath by  John Steinbeck


H

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

The Heart of the Matter by Graham Greene


I

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


L

Loving by Henry Green


M

Madame Bovary by Gustave Flaubert


N

Nostromo by Joseph Conrad


O

One Flew over the Cuckoo's Nest by Ken Kesey


P

Play it As It Lays by Joan Didion


R

Ragtime by E.L. Doctorow


S

Shirley by  Charlotte Bronte


T

Tender is the Night by F. Scott Fitzgerald


U

Under the Volcano by Malcolm Lowry


V

V. by Thomas Pynchon


W

The Wide Sargasso Sea by Jean Rhys


Y

Yarrow by Charles de Lint


Z

Zuleika Dobson by Max Beerbohm

 

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

I hope.


June 03, 2009

An Updatey Kind of Post

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

  • I finally got my medical records from the cardiologist. It only took about 5 weeks.
     
  • I have been trying to get into the Dysautonomia lab in NYC for extensive dysautonomia testing, which my rheumy fully supports. This place is harder to get into than the Freemasons!  They already rejected my prescription from the Rheumy, saying they need more information on my symptoms -but not from me (who do they think experiences the symptoms, Barack Obama?). So I am off to see #25, so I can give him a list of my symptoms and history, which he can then re-package and send to the lab.  It is completely ludicrous.
     
  • We had the Middle school IEP meeting for Joe (Middle school! Bloody hell! I'm not ready!). It went well, but it was a bit disconcerting to see the amount of backup I got when I asked for an aide for him. No fewer than FIVE (5) of the people who work closely with him nodded emphatically  and said he would need a full-time aide in middle school. I am grateful for the support (and of course we got the aide). But now I am kind of terrified of middle school. And Joe will hit the roof when he learns he will have a 1-one-1!  Too bad. He will definitely need it -at least for the first year. 

    He is going to be in a co-teaching class: A mixture of GenEd and SpecEd kids and two teachers. One SpecEd and one Gen Ed. I think this will be a good setup for him.
     
  • Grace turned 9 in May.  She is halfway to (official) adulthood now. Mother of God! I'm not ready for this!
     
  • Guys may want to skip this one: I have been feeling especially shitty of late. Seizurey, headachy, numb-footy, unsteady, interspersed with short periods of feeling like my pre-seizure self. I think a lot has to do with the fact that my cycle is completely messed up. I have been trying to get in to see a new gynecologist, recommended by the rheumy, who I trust.  However this new doctor is somewhere between the Freemasons and the NYC dysautonomia clinic on the scale of 'difficulty to get into" I have considered going back to my old gyno, but I have rejected this notion on grounds that she is a bitch.
     
  • (Yes. I am a bitch too. I have never denied this)
     
  • I stopped taking Limbrel.  This was kind of an unconscious decision. I forgot to take it for a day. When I remembered that I had forgot, I realized that I was feeling marginally less bloaty, so I went right on forgetting! After a(nother) day or so, the severe right-side abdominal pain I had had for a month, which I had thought was an ovary, started to abate.  It has not recurred.   The rheumy says it was the right decision. Another med bites the dust!
     
  • My hands are slightly better, but I think this is because the weather has been warmer.
  • My good friend Wynda, who left this area about 10 years ago, returned for a visit and it was lovely to see her. She was amazed (naturally) at how big and interesting the kids have become. When last she saw them, there was only one, and he was just an eating and pooing machine back then (albeit a cute one!).
     
  • I have not lost the 10 pounds I gained while on Limbrel.  I went back on Atkins for about a week, but ...Man!  -steak aside  (and I love steak, but it is expensive); it is so bloody BORING! I don't know how I did it for so long...

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

May 06, 2009

Limbrel Update (Limbrel Part III)

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

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

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

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


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

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

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

That took a little digging, but I found it.

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




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

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

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

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

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

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

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

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

Sometimes being a pioneer is bad.

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

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


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

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

I will keep you guys updated.

April 22, 2009

Show Business

This was a joke told to me by my uncle:

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

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

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

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

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

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

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


Freaks1932lobbycardbh4

The cast of the movie "Freaks".

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

It was showbiz.


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

It is quite sad.

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

Sandy-allen1

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

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

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

   


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

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

Nels nelson eds  

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

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

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

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


Mongolian20acrobats

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

Old chinese contortionist 2 ...unless they happen to be this guy, of course. Wang Jiangsheng is 83 years old. He reminds me a little of me great-uncle Seamus, except Seamus was 78 and used to put both his feet behind his head.  it was his party piece.  ...but I digress.

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

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

Garry turner1  Many people with EDS don't like Garry Turner. They think he paints a false picture of the condition, that people think we can all do stuff like this, which -of course, we can't. Garry officially holds the world record for stretchiest skin. His skin is ridiculous, even by EDS standards.  

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

Flexible-girl-contortionist

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

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

 

The-stretch-390


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

Nowadays the "freaks" choose to be freaks.  They spend money for it.
Enigma1

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

Who are the real freaks?

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

Me too.

April 17, 2009

Limbrel Review Part II

I am still taking the "frug" Limbrel. It's been just over a week now, and I am happy to report that the worst of the stomach issues seem to have passed (OK that was a bad joke). I am still more heartburny and stomach-upsetty than normally, but  -happily for my family-  the toxic flatulence has relented for the most part. The remaining residuals I can blame on the dog, who is usually the most frequent offender in that regard. It helps that he habitually parks himself right beside me, anyway. Hey, if opportunity presents itself, who am I to turn it down?

I have noticed no improvement in my arthritis whatsoever.

But here's a funny thing:  I bent to pick something up off the floor the other day.  As I have Ehlers-Danlos Syndrome, I am um.. "limber". I pick stuff up and tie my shoes by bending at the waist and keeping my knees straight or locked (yes. there is a difference: "Locked" in my case is a ways past straight). I don't even think about it, it's just what I do and have done just about forever. I get funny looks when I tie my shoe in public.

Well, I bent to pick something up off the floor the other day and felt a funny sensation in the back of my right knee:  A an unfamiliar tightness, which took me by surprise. I thought little of it at first -thought maybe I had slept funny- but it has continued for some days, In fact, it has now spread to the left leg, too. 

Now, when I at the waist bend to put my palms flat on the floor... Well, I can still do it, but I feel that pull in the back of my legs that was not there before. Is this the Limbrel?  I don't know. I can't think what else has changed.

Another thing that has changed, which I am NOT happy about: I have suddenly gained some weight.  My weight usually fluctuates about 4 lbs from day-to-day or week-to week, depending (I assume) on whether my body is choosing to hold or flush water and sodium.  However it does so within a range, and if it stays in that range I don't worry too much about it. Usually  it stays in the 6-9 lb range when looking at the last number on the scale. Now those numbers have changed and the range is from 9-2, which means the middle number is also changing more often than not. I am so NOT happy about that. Again, -although it has been a holiday, and I did eat a little more than usual, I don't think it was enough to cause that much weight gain.  I think I have Limbrel to thank for at least three of those four pounds.

I am seriously tempted to throw in the towel on this Limbrel business, but it is too early yet, so I will persevere. 

I will keep you guys posted. 

April 11, 2009

Frug: A Limbrel Review, Part I

I mentioned that I have started taking Limbrel for the arthritis in my hands.  Limbrel is officially approved for the treatment of osteoarthritis, However, we are not sure if this is the type of arthritis I actually have (me being me: test results indicate little wrong, but clinical presentation and pain say otherwise). I think my poor rheumy is desperate at this point, because my hands are getting worse, and nothing that has helped has been tolerated by my body (which appears to be the story of my life).

Limbrel is a new product. Not many people are taking it yet. So I thouRx_limbrelght I would write a little review here and document my progress on OSM for those of you who might be interested.

But before I do that, I am  going to explore Limbrel itself, how it came about, and why is it classified and marketed the way it is.

Limbrel is an interesting product. It is not considered a drug. It may sound like a drug; -with a generic name (flavocoxid) and everything. It may look like a drug (see picture of druggy looking product and packaging).  It is only available by prescription here in the USA. However, It is actually is classified -not as a drug- but as a "medical food product".

What the fuck does that mean? I hear you ask?  Indeed, I said it to meself. So I tried to find out.

According to the FDA, as defined in in section 5(b) of the Orphan Drug act (Orphan drugs! This is getting better already! Are they drugs without parents or drugs for kids without parents?  I have no parents, so I probably qualify either way...  but I digress...) a medical food product is:

a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.


Huh?

So by these guidelines, shouldn't Ensure be a medical food? Or the ketogenic diet? -or a lowfat diet, for that matter?  Indeed,  all food -if you think about it, is to manage a specific medical condition called malnutrition.  Naturally, some works better than others in achieving this end (resulting in many morbidly nourished people in this country -but that's a whole 'nother post!).

Where is the line between "food" and "medical food"? Indeed, where is the line between "medical food" and "nutritional supplement"? Because although Limbrel  looks like a drug, the descriptions sound more like a nutritional supplement to me. See for yourself. This is an excerpt taken from the official site:

Limbrel contains flavocoxid, a proprietary blend of natural ingredients from phytochemical food source materials. Flavocoxid is comprised primarily of the flavonoids such as baicalin and catechin. These or similar ingredients can be found in common foods such as soy, peanuts, cauliflower, kale, apples, apricots, cocoa and green tea. The fact that these and similar ingredients have been widely researched and used in medicinal products in other countries also supports biacalin and catechin’s safety and effectiveness. Limbrel provides levels of these flavonoids needed to meet the distinctive nutritional requirements of people with osteoarthritis and cannot be obtained through simply changing the diet.


Hmmm.  So it is a food and not a drug because it is a naturally occurring product which is extracted from plants.  Ah! OK then.

But hang on a minute: Morphine is extracted from the dried milky exudate of the unripe seed capsule of the opium poppy (Papaver somniferum). (-I found that definition on a web site, BTW. OSM has pretty good English, but "exudate" is not a word I use daily. Nor is "somniferum" -but I kind of like it!).  So Morphine is a natural plant extract, too. Why then is Morphine, which is a natural plant extract, classified as a Schedule II narcotic drug, and Limbrel, which is also a natural plant extract, classified as a medical food?  Indeed, why is St. John's Wort, which is also a natural plant extract, and only available by prescription in Ireland, classified as a "nutritional supplement" (i.e even lower on the totem pole than "medical food" ) and available over-the-counter here n the US? 

It's all quite confusing, really.

OK. Let's get the simple explanation out of the way first: One keyword is "narcotic"  Morphine is narcotic, which according to Dictionary.net means:


A drug which, in medicinal doses, generally allays morbid susceptibility, relieves pain, and produces sleep; but which, in poisonous doses, produces stupor, coma, or convulsions, and, when given in sufficient quantity, causes death.


Death is not a good side effect. Nor is addiction, which is the other big thing with narcotics. I can understand why morphine would be regulated so closely. You can't really sell it in the vitamin aisle.

So taking this same logic: Is Limbrel a food, not a drug because it is not addictive and cannot be overdosed on? So if I happened to down me entire bottle of Limbrel in a single sitting, does this mean I wouldn't get seriously ill or die?  This is not a theory I intend to ever test, BTW; -especially given the side effects I have experienced on just the regular dose (more on this later), but I am thinking out loud here.

And what about St. John's wort (SJW)?  That is available on the supermarket shelf and you can overdose on that. An overdose can cause Seratonin Syndrome, which is dangerous.

Symptoms of serotonin syndrome include:

 
  • Confusion
  • Seeing or hearing things that are not really there (hallucinations)
  • A fast heartbeat (tachycardia)
  • Feeling faint
  • Fever
  • Sweating
  • Muscle spasms
  • Difficulty walking
  • Diarrhea.
     
In one reported case, an overdose of St. John's wort caused seizures.


But SJW is not regulated as heavily as Limbrel is. SJW is not classified as a "medical food" but as a nutritional supplement, and is therefore available in me local supermarket, parading merrily on a shelf my kids can easily reach.

Hello, FDA?  Here is a new word for you: Consistency.

I am still curious why Limbrel walks like a drug and talks like a drug but is not a drug?  I did a little patent search: Limbrel has two so far; this one  and this one  and a couple pending.  I suspect the answer is the simplest one:

Money.

If you control the patent and the product, -especially with the backing of the FDA, you become the sole and defacto supplier for 50 years.  It's a really clever move.  If Limbrel was simply marketed as a nutritional supplement, it would lose a lot of cachet -AND it would mean open season for competitors.  Getting classified as it has been was pure genius. Not only for the patent and FDA protection, but because most consumers think "prescription" means "better".

Limbrel was developed by Primus Pharmaceuticals, a private company run by a bunch of late-middle-age-to-mature white guys. As it is private, I can't get hold of their financial reports, which is a shame. I was pretty curious about some of their activities. I am particularly interested to see how they managed to make a common substance found in everyday food into a prescription product.  I strongly suspect their real genius lies in management, marketing  and lobbying, not in science.   I could be wrong, of course. OSM is rather known for her cynicism.

I tried to find some evidence to back me suspicions, thinking I would unearth a huge amount of political contributions, but I only found a few campaign contributions by JD Weir, who is the Head Honcho  there (although I'm sure that's not what it says on his business cards) to support some local right-wing republicans. No big surprise there.  I'm sure the real money was hidden behind some ostensibly independent lobbying group.

I'll have to dig a little deeper.

You know the biggest irony is the amount of time this piece has taken me to write. There is a simple reason for this. My hands are KILLING me at the moment. I have had to take many breaks, and slather on the Voltaren gel. The irony of this is not lost on me. I aggravate the inflammation by writing about Limbrel, so I need Limbrel to combat the inflammation.

It's messed up.

As to how I am doing with Limbrel? Well,  It is early days yet -not even a week. As it is not a drug, I was told not to expect results immediately. I have mainly had side-effects so far: upset stomach and noxious flatulance that could clear the mall in record time. I was told this is my body being "cleansed of toxins" I don't know if I buy that or not, but I am giving it more time, but not much. If the toxins aren't out soon. Himself will leave me and the children and animals will go with him. 

BTW my new name for Limbrel the half-food/half-drug is this:

Frug.

It sounds filthy, doesn't it? Time will tell if it is.

April 08, 2009

More From the Floor

I knew I was in trouble when I got lost on the way there.  I had no excuse for getting lost. This rheumatologist has been my doctor for a couple of years. Not only that, but her office is in an area I know well; on the same street as The Chiari Institute, the radiologist, Filene's basement and my cardiologist.  I still managed to get lost and I was 15 minutes late. Things went downhill from there.

Backtrack a little: I thought I had discovered a breakfast I could eat. This breakfast worked all last week, when I was ferrying a friend's kid to and from school in the morning (long story). So I ate my new "magic  breakfast" yesterday on the way to the rheumy's office. Eating breakfast was my mistake. Actually, assuming this week would be the same as last was probably my real mistake.

I ate breakfast and got lost!  I guess confusion is the first symptom of my fits. I always thought it was visual disturbances, but the confusion definitely started first.  I suppose the other times that I was confused, I didn't know I was confused (being confused and all). I guess it is hard to know these things without another person present, however, to get lost en route to somewhere familiar is pretty definitive.

While I was in the waiting room, the usual "other" seizure aura stuff started in force. I knew I was going to seize and there was nothing I could do about it. I just hoped I would get to an examination room before it happened. I didn't want to freak out the other patients -they already look askance at my obvious lack of stiffness  (Once a man told me I had no right to be there because I could walk fluidly. I put my foot on top of my head and said "too flexible can be just as bad as not flexible enough". He shut up). My wish was granted. The attack held off until I got to a room. I had a pretty big fit on the floor of the examination room almost as soon as the rheumy walked in the door.  The poor woman was at a loss what to so. Seizures aren't her thing. I could hear the distress in her voice as she tried to calm me (and in-between convulsions, I am reassuring her. "It's OK. I'm used to this"). 

After I had stopped conulsing, most of the actual appointment was conducted with me sitting on the floor -just in case another one hit (two more did) and the doc sitting on a chair.  She was wearign cute shoes. 

I need to backtrack again for a bit here:  Dr Curious had suggested I get some testing done for dysautonomia. There is a specialty lab in NYC which does this testing, but you need a referral. I didn't even bother with my PCP. He is a nice man, but terrified of "my" stuff and I knew he would just tell me to speak to #25. So I spoke to #25. He suggested I try contact a different hospitap altogether.   I asked him if he would would write the referral? Sure he would!  I just had to tell him where I wanted to go and what to write.  (quoi?)

So then I went to me cardiologist. He suggested I see a nephrologist and suggested yet ANOTHER center. He also suggested the rheumatologist might know something.  It so happened that between cardiologist and rheumatologist visits, the kids had their visit with their rheumatologist a couple of weeks ago, I asked her if she had any suggestions or ideas. She didn't but she would ask someone. Call her in a week. I did and she has not returned my call. Big surprise.

So all this came flooding out while I sat on the floor of the rheumatologist's examination room. I told her I was at my wit's end and didn't know what to do.  She picked up the phone, called someone, and in about three minutes, she had the number for the dysautonomia lab, as well as a number for a new neurologist (don't know if I will see him or not) and a prescription for dysautonomia testing. -Boom.

I think I mentioned before that I love my rheumatologist.

She finally got to actually examine me and my hands, which are getting worse, BTW -about 40 minutes into the appointment.

I am trying a new product Limbrel which is a "medical food product" not a drug, but only available by prescription. There is a whole 'nother post therein, I suspect, but not today.  Today I have been too busy trying to pry my tilt-table records from the cardiologist's possessive receptionist.






April 03, 2009

EDS Turkey

I know it's not November, but I recently found this picture. Unfortunately, I didn't manage to scan it before a cat knocked a glass of water over it. I dried it out, and I think (hope) you will see enough detail to get my point.

This turkey has Ehlers-Danlos Syndrome (EDS).

EDS Turkey0001

































It would be more correct to say that the hand from which which this turkey was made has EDS.

Grace figures she was in Kindergarten when she drew this handsome guy. I figure it was first grade; -although in fairness, I would trust her memory more than my own. So she was probably  5½ or at most 6½ when she drew him.

Note how long and slender her fingers are.  Many (not all) people with EDS have long fingers like these. Grace's hands have never looked like a child's hands. Even as a newborn, her hands looked like those of an adult -but in miniature. She had long, slender fingers and palm. She never had chubby, stumpy baby hands, not even when she was a chubby, round-cheeked baby.

This is not to say, of course, that all kids with long slender hands have EDS. But it might be one part of a puzzle if other signs are present.

April 01, 2009

An Unhappy History of X-rays

My son Joe showed up to his 7yo well-checkup with a fairly advanced urinary tract infection. Good thing they check that stuff, because he hadn't complained of any problems; and as he was pretty much independent in that area, I hadn't noticed any.

Long story short: After a few rounds of antibiotics, several months, a few sonograms, many follow-up visits and a lot of palaver, there was still blood in his urine. They then decided to do this test, which involved taking an x-ray of his bladder while full, and then he had to pee while they x-rayed the process in real time -to ensure all was working OK.  The techs were two gentlemen of mature years; -nice men, but given to lots of platitudes and false joviality (is that a word?  it is now). "We're just going to take a picture of your bladder, Joe. This won't hurt a bit".

Here was the problem: The bladder had to be full of s special x-rayable fluid. To get it in there... well, it wasn't ingested.  They used a local anesthetic, but Joe still said it hurt.  His concerns (and mine) were poo-pooed by the Overly Jovial Men. This was before I  knew we have Ehlers-Danlos Syndrome Type III. It is well documented that Lidocaine doesn't work too well on us. Poor Joe.

So they filled up his little bladder, took a few pictures, and then they wanted him to pee lying down. This insulted Joe's Autistic sensibilities hugely. He was a BOY! He didn't pee lying down like a baby! Thankfully the while contraption tilted, so they uprighted him while still on it, which freaked him out a bit (more). I can still see him standing on that table, naked, all 48lbs of him, shivering, goosebumply, and pale blue; trying to hold it together enough so that he could pee and get out of there. He did and I was proud of him.

The test was normal.

A few days later (I'm not kidding!), we went on vacation to the Jersey shore. On the very first night, Joe fell onto his head. I knew immediately by the scream that he was really hurt.  The ER poo-pooed our concerns (they were closing!)  and sent us home with he usual instructions: wake him every few hours and come back if he is unresponsive or starts vomiting -but only after they re-open at 10am (nice).

The next morning, there was obviously something quite wrong. He was completely white, refused to eat or drink and complained of a headache. On the way to the ER (10 minutes) he screamed at the slightest bump or pothole and threw up twice.

He needed a head CT. He had actually been doing really well with the whole hospital thing until an overly-cheery young female tech announced that she was "just going to "take a picture of his brain"

Shit.

I don't know quite what he thought this might entail, but this was less than a week after the bladder thing, and I can only imagine his thoughts.

Joe lost it.  He completely and utterly lost it.

He went into full "fight" mode, throwing Ninja punches and kicks (aimed to miss) that he had seen on the telly in her direction.   She ended up backed against a wall, helpless. She was NOT amused.

So Joe was sent to the ER proper, put in a gown and left with me to try and calm down a bit. They wanted to sedate him for the CT scan, but there was a question as to whether he would allow them to run an IV without a fight. Given his stress level, I didn't think it was likely, so I gave them permission to restrain him if needed.

Restraining USUALLY means swaddled in a blanket and sat on (not really) by several nurses. Imagine my horror when a tall and tattooed young gentleman, built like a brick outhouse, with the muscles on his muscles bulging out of his scrubs, walked down the ER and asked me, "where is the the kid who needs to be restrained?" I gulped and pointed to Joe. I mean, honest to God!  Talk about overkill! I think one of this guys arms would have outweighed Joe. He could have restrained him with one thumb! I explained to Captain Meaty -as I had to all the nurses- that Joe is Autistic and to take their cues from me. Thankfully, they listened.  In fact they were really, really good.

It turned out that Captain Meaty was actually a complete marshmallow. He bonded with Joe over Spiderman and Pokemon. The nurse explained to Joe -in detail- how they were going to run the IV and Joe allowed them to do it. He didn't need to be restrained.

In fact, Joe was responding so well to this guy -now renamed Mr Marshmallow, that we decided to try  the CT scan without sedation. Mr Marshmallow went into the room with him, stayed with him, and talked him though the whole thing. Joe stayed still, they got the pictures first time and we were all done. The CT scan was clear, thank goodness.

So now you know why Joe doesn't like x-rays.

In contrast, Grace had her first x-ray (chest) conducted with maximum niceness and minimum drama in a private after-hours pediatrician's office, which is still called "the skeleton doctor" In Grace parlance. She is always happy to go back there. 

"Which doctor are we going to see?"
"The skeleton doctor"
"Yay!"

First impressions last.

DAILY CARTOON click to enlarge
ANDERTOONS.COM MEDICAL CARTOONS

iVillage Message Board on PDD-NOS/Aspergers

Some of my condtions

  • Syringomyelia
    This is a fluid-filled gap in the spinal cord (yes the cord) which can cause pain and paralysis. Mine is said to be "small" and "asymptomatic" ...Said by other people, that is.
  • Hypoglycemia
    Reactive hypoglycemia is like the opposite of diabetes. I produce too much insulin, so I have to keep to a strict diet. This is not my favorite site, but a good start.
  • Ehlers-Danlos Syndrome
    This is a genetic connective tissue disorder. It causes most of my pain problems
  • Raynauds Syndrome
    This doesn't bother me much at all. I just try to keep warm. However I am putting it in there for awareness reasons.
  • Glaucoma
    There is a strong history in my family. I am officially "at risk" (i.e. some minimal nerve damage -no vision loss yet) but they reckon it is only a matter of time.
  • Hemochromatosis
    I don't have this, but like many of European descent, I am a carrier. Hemochromatosis can be a ticking genetic timebomb. Educate yourself.
  • Scurvy
    Yes Really. Who knew it could develop in the 21st century? Get your vitamin levels tested...