Deja Vu

[Worried_Dad]

Came across this in the March issue of Discover Magazine and it almost made me physically ill. It's an interview with Dr. Barry Marshall, who shared a 2005 Nobel Prize for proving that H. pylori causes ulcers and stomach cancer. Of course, the medical establishment beat him to a pulp for years before accepting his results. Here's an excerpt from the interview's intro.

 

The medical elite thought they knew what caused ulcers and stomach cancer. But they were wrong - and did not want to hear the answer that was right.

 

For years an obscure doctor hailing from Australia's hardscrabble west coast watched in horror as ulcer patients fell so ill that many had their stomach removed or bled until they died. That physician, an internist named Barry Marshall, was tormented because he knew there was a simple treatment for ulcers, which at that time afflicted 10% of all adults. In 1981 Marshall began working with Robin Warren, the Royal Perth Hospital pathologist who, two years earlier, discovered the gut could be overrun by hardy, corkscrew-shaped bacteria called Helicobacter pylori. Biopsying ulcer patients and culturing the organisms in the lab, Marshall traced not just ulcers but also stomach cancer to this gut infection. The cure, he realized, was readily available: antibiotics. But mainstream gastroenterologists were dismissive, holding on to the old idea that ulcers were caused by stress.

 

Unable to make his case in studies with lab mice (because H. pylori affects only primates) and prohibited from experimenting on people, Marshall grew desperate. Finally he ran an experiment on the only human patient he could ethically recruit: himself. He took some H. pylori from the gut of an ailing patient, stirred it into a broth, and drank it. As the days passed, he developed gastritis, the precursor to an ulcer: He started vomiting, his breath began to stink, and he felt sick and exhausted. Back in the lab, he biopsied his own gut, culturing H. pylori and proving unequivocally that bacteria were the underlying cause of ulcers.

 

When will the medical establishment learn from their own tragic mistakes of the past? When will they temper their arrogance with some well-earned humility? I know there are plenty of good guys like Dr. Marshall on the front lines of PANDAS - Dr. T, Dr. K, Dr. L, Dr. Cunningham, Dr. Leckman, etc. - who are fighting the good fight despite implacable opposition. But it's disheartening to see that this same pattern of narrow-minded denial seems to play out again and again while innocent patients (like our children) suffer.

 

Sigh....

[jewels]

Hi worried dad,

 

Our country is run by two important views

 

1. Go by only what's inside a medical box, and never think outside of it

 

2. Money -- cheapest way to ease a symptom

 

 

And I've just thought of a third reason, if we have the Drs like you have that want to help, well they will be ripped apart by the GMC

 

 

Jules

[MomWithOCDSon]

Thanks, Dad! This was one of the examples I fired back at our psychiatrist when he first chided me that all the evidence regarding PANDAS was "anecdotal." I almost screamed at him, "And I suppose YOU still think ulcers are caused by stress, huh?!" He seems to have come around some since, though, commenting to DH that he wished he had as much confidence in HIS methods (psych drugs) as I have in MINE (abx)!

 

At least it is heartening to know that the PANDAS experts are getting some time and space at the International OCD Foundation conference, as well as the AutismOne conference this year!

[Worried_Dad]

Good point - there are some hopeful signs lately, aren't there? Maybe the tide really is turning, and our kids' painful experiences will ease the pain of future PANDAS children.

 

Thanks for the "glass half full" perspective. I needed that!

 

 

Thanks, Dad! This was one of the examples I fired back at our psychiatrist when he first chided me that all the evidence regarding PANDAS was "anecdotal." I almost screamed at him, "And I suppose YOU still think ulcers are caused by stress, huh?!" He seems to have come around some since, though, commenting to DH that he wished he had as much confidence in HIS methods (psych drugs) as I have in MINE (abx)!

 

At least it is heartening to know that the PANDAS experts are getting some time and space at the International OCD Foundation conference, as well as the AutismOne conference this year!

[Megs_Mom]

Great post. I have been reading a lot lately about Arthritis caused by Strep, Mycoplasma or other infectious agents, and they have the same controversy - still. I read the Back Road & went on their website. http://roadback.org/. Since I am now breathing again after Meg's last few PANDAS exacerbations, I am realizing that my dh has acute onset rheumatoid arthritis, that seems to mirror Meg's worst onsets. I am struggling again to find anyone to take this seriously, and to consider antibiotic therapy. Despite having research approved by NIH & recommendations for abx, it is still really hard to get anyone to take this seriously.

 

After 2 years of extreme exacerbations of arthritis - and all docs know about Meg's illness - not one person has suggested that abx might help him. Frustrating!!! Once again, I am forced to say "what harm could it do to just try!"

[MichaelTampa]

I know the 10 years or however long it took for the ulcer guy to gain acceptance on his theory. But, I wonder if what is more unusual in that instance is that it resulted in a complete change in theory in a mere 10 years. I have heard meaningful discussions that generally the way theories change is that the current people in the field just eventually get old and die, and the newcomers will at least listen and consider. I don't remember any examples at the moment. That type of thing normally takes much longer than 10 years.

 

Michael

[Worried_Dad]

Hah - just have to outlive the naysayers, eh?

 

The problem is, the folks who are afflicted now can't afford to wait for the next generation to settle the controversy. Seems like paradigm shifts in medicine are like continental drift: they reshape the world, but they take a really long time to do it.

 

Anyway, I guess I should remember that Barry Marshall's story had a happy ending. The good guys won, the critics were proven wrong, and his theory did become "accepted medical wisdom" eventually.

 

By coincidence, I heard a segment on NPR this morning about a new book ("Asleep") that describes the mysterious epidemic of "encephalitis lethargica" that struck worldwide in the 1920's. The author mentioned that this illness - believed to be triggered by a viral infection - caused inflammation in the basal ganglia that resulted in extreme, rapid-onset psychiatric symptoms in afflicted children. Millions were institutionalized as a result.

 

So, with all the precedents, why do so many docs look at you like you're a lunatic when you suggest that infection might be triggering your PANDAS child's neuropsych symptoms? I just don't get it....

 

 

I know the 10 years or however long it took for the ulcer guy to gain acceptance on his theory. But, I wonder if what is more unusual in that instance is that it resulted in a complete change in theory in a mere 10 years. I have heard meaningful discussions that generally the way theories change is that the current people in the field just eventually get old and die, and the newcomers will at least listen and consider. I don't remember any examples at the moment. That type of thing normally takes much longer than 10 years.

 

Michael

[LNN]

By coincidence, I heard a segment on NPR this morning about a new book ("Asleep") that describes the mysterious epidemic of "encephalitis lethargica" that struck worldwide in the 1920's. The author mentioned that this illness - believed to be triggered by a viral infection - caused inflammation in the basal ganglia that resulted in extreme, rapid-onset psychiatric symptoms in afflicted children. Millions were institutionalized as a result.

 

I tried to look for this on NPR but couldn't find it - do you recall the author? This is a "favorite" topic of mine, since at his worst, my son would "freeze" and remind me of the movie "Awakenings" with Robin Williams and Robert deNiro - based on the same epidemic of lethargica. I literally woke my husband at 2am in the beginning of our nightmare in a complete panic. Didn't matter that lethargica has rarely been seen since. I was convinced my son had it. Would love to read the book if you can recall the author.

 

As for the rest of this thread, while I whole-heartedly agree with all the sentiments, I've had this "essay" running in my mind for the past week, after listening to Kurlan's webinar. I'm left with the horrible feeling that the past 10 years have been about a handful of doctors poking at each other's work and accusing each other of "bad science" in an academic way and that both sides - Kurlan and Swedo - may both have become "married" to their ideas and have become blind to any truth in what the other is saying. If we're going to move this forward, we all have to be willing to "date" our ideas and theories and be willing to break up with them and date other ideas. Goes for the doctors and the parents. I think it's our job to ask questions - lots of them. But I know I personally am just as guilty of only wanting to listen to "convenient" truths that fit into my world. We need to reframe this as a big puzzle to be put together rather than a battle between sides.

 

Laura

[dut]

LLM - try this site

 

http://www.oliversacks.com/

 

he's the dr that the awakenings film was about (and his patients). If you haven't read any of his books, I think they're great. He's super compassionate and really human(e) in his approach.

 

:-)

[dcmom]

It was on the Diane Rehm show- you can get a podcast on www.WAMU.org. She is my favorite host- but I missed the show as I have my girls home today.

[Worried_Dad]

Hi, Laura:

 

The author's name is Molly Caldwell Crosby. Here's a link to the book on Amazon.

 

http://www.amazon.com/exec/obidos/ASIN/0425225704/wamu-20

 

Hope that helps!

 

 

By coincidence, I heard a segment on NPR this morning about a new book ("Asleep") that describes the mysterious epidemic of "encephalitis lethargica" that struck worldwide in the 1920's. The author mentioned that this illness - believed to be triggered by a viral infection - caused inflammation in the basal ganglia that resulted in extreme, rapid-onset psychiatric symptoms in afflicted children. Millions were institutionalized as a result.

 

I tried to look for this on NPR but couldn't find it - do you recall the author? This is a "favorite" topic of mine, since at his worst, my son would "freeze" and remind me of the movie "Awakenings" with Robin Williams and Robert deNiro - based on the same epidemic of lethargica. I literally woke my husband at 2am in the beginning of our nightmare in a complete panic. Didn't matter that lethargica has rarely been seen since. I was convinced my son had it. Would love to read the book if you can recall the author.

 

As for the rest of this thread, while I whole-heartedly agree with all the sentiments, I've had this "essay" running in my mind for the past week, after listening to Kurlan's webinar. I'm left with the horrible feeling that the past 10 years have been about a handful of doctors poking at each other's work and accusing each other of "bad science" in an academic way and that both sides - Kurlan and Swedo - may both have become "married" to their ideas and have become blind to any truth in what the other is saying. If we're going to move this forward, we all have to be willing to "date" our ideas and theories and be willing to break up with them and date other ideas. Goes for the doctors and the parents. I think it's our job to ask questions - lots of them. But I know I personally am just as guilty of only wanting to listen to "convenient" truths that fit into my world. We need to reframe this as a big puzzle to be put together rather than a battle between sides.

 

Laura

[lboll]

Hi, this is really interesting. When I first took my son, diagnosed with autism, in to see a doctor about a possible PANDAS link, he said, "Well, this is kind of fringe thinking. However, it was fringe thinking many years ago when a doctor suggested that the HPylori virus may cause ulcers. So, I'm willing to give this a try." I emailed this to Beth Maloney, and she said, "Look at the dedication in my book". I did, and her book is dedicated to this very same doctor who came up with the HPylori link.

 

I'm so thankful some doctors are willing to keep pushing...

 

 

Came across this in the March issue of Discover Magazine and it almost made me physically ill. It's an interview with Dr. Barry Marshall, who shared a 2005 Nobel Prize for proving that H. pylori causes ulcers and stomach cancer. Of course, the medical establishment beat him to a pulp for years before accepting his results. Here's an excerpt from the interview's intro.

 

The medical elite thought they knew what caused ulcers and stomach cancer. But they were wrong - and did not want to hear the answer that was right.

 

For years an obscure doctor hailing from Australia's hardscrabble west coast watched in horror as ulcer patients fell so ill that many had their stomach removed or bled until they died. That physician, an internist named Barry Marshall, was tormented because he knew there was a simple treatment for ulcers, which at that time afflicted 10% of all adults. In 1981 Marshall began working with Robin Warren, the Royal Perth Hospital pathologist who, two years earlier, discovered the gut could be overrun by hardy, corkscrew-shaped bacteria called Helicobacter pylori. Biopsying ulcer patients and culturing the organisms in the lab, Marshall traced not just ulcers but also stomach cancer to this gut infection. The cure, he realized, was readily available: antibiotics. But mainstream gastroenterologists were dismissive, holding on to the old idea that ulcers were caused by stress.

 

Unable to make his case in studies with lab mice (because H. pylori affects only primates) and prohibited from experimenting on people, Marshall grew desperate. Finally he ran an experiment on the only human patient he could ethically recruit: himself. He took some H. pylori from the gut of an ailing patient, stirred it into a broth, and drank it. As the days passed, he developed gastritis, the precursor to an ulcer: He started vomiting, his breath began to stink, and he felt sick and exhausted. Back in the lab, he biopsied his own gut, culturing H. pylori and proving unequivocally that bacteria were the underlying cause of ulcers.

 

When will the medical establishment learn from their own tragic mistakes of the past? When will they temper their arrogance with some well-earned humility? I know there are plenty of good guys like Dr. Marshall on the front lines of PANDAS - Dr. T, Dr. K, Dr. L, Dr. Cunningham, Dr. Leckman, etc. - who are fighting the good fight despite implacable opposition. But it's disheartening to see that this same pattern of narrow-minded denial seems to play out again and again while innocent patients (like our children) suffer.

 

Sigh....