May 12, 2008

Making Sense Of Bipolar Disorder Overdiagnosis

Most of you are likely aware of a study that was released last week showing that bipolar disorder was being overdiagnosed at about a 50 percent rate. I've now had a chance to review the entire paper from the Journal of Clinical Psychiatry and, before I try to make sense of its findings in a real world way, let me add a note of caution. This study involves only one large clinic in Rhode Island, so it's not necessarily representative of America as a whole (except I fear it well could be) and Mark Zimmerman, the lead author, calls for others to attempt to replicate his findings. I hope other researchers look into this matter because--and this is Zimmerman's view--we may have a crisis of overdiagnosis (or false positives) as a result of doctors who either aren't using the appropriate clinical instruments to assess someone's "bipolarity" or are just diagnosing by the seat of their pants. As a result, hundreds of thousands of people are winding up on meds they don't need, meds which injure some people (not everyone. Yes, I know some people do derive some benefit from them) and a diagnosis that follows them for life and can lead to discrimination in employment, health and life insurance and personal relationships. That's serious stuff.

Zimmerman's paper can be accessed in full here. It is an important study, in my opinion, and one I encourage all of you to read. CL Psych has already offered his thoughts here. My earlier assessment is here. It's deeply ironic, of course, that Zimmerman's paper appears during Mental Health Awareness Month.

I want to point out that this is not an attack on anyone or any school of thought in particular. It's not an argument that someone should or shouldn't be on meds or off meds. I am simply not looking for that kind of a fight. So please read the following in that light. Because I think my own case may be illustrative of the phenomenon Zimmerman describes. I want to stress the "may" part of that again. I have not reached any final conclusions. I simply have lots of questions.

For example, Zimmerman uses familial history of bipolar disorder in his paper to rule out bipolar disorder in people in the study who did not meet formal clinical criteria for bipolar disorder according to the Structured Clinical Interview for the DSM-IV (SCID). In other words, if the people didn't test out as having bipolar disorder and there was no family history of bipolar disorder, then Zimmerman determined that these people had been bad diagnoses if they had previously been given a bipolar disorder diagnosis.

In my own family going back as far as the 1850s I know of no cases of bipolar disorder or any other formal psychiatric diagnosis with one exception. Period.

There is no one to be suspicious of in my family tree on both sides of the family (there are a few drunks in the family tree, but we are Irish-French-British, so spot me a few a drunks in the family tree). The only known suicide was of a cousin by marriage who killed himself in the early-1960s, but he wasn't a blood relative.

Taken together, this, of course, makes me very suspicious of my own bipolar diagnosis, particularly in light of Zimmerman's paper. My familial background doesn't support a bipolar dx for me.

Second, I know for fact certain that when I was diagnosed by a psychiatrist in 1989, the psychiatrist did the diagnosis in about 10 minutes and was not using a formal diagnostic tool (unless it was in his head). I did not show up at this doctor's office in crisis or in the midst of mania or depression. Indeed, I had been seeing a psychologist for about a month and I had been working on my first novel for a few months and was energized in a good way. Nonetheless, life was troubled, things didn't fit together and I had had a very nasty patch of depression a couple of months earlier (I'll plead guilty to having bouts of depression since my teens, although they were well spaced out episodes). The psychologist didn't diagnose me but suggested to me that I might have manic depression and asked if I would like to be referred to a psychiatrist. We discussed some of the symptomology of manic depression (this was before it was changed to bipolar disorder in 1994).

I could see where the depression symptoms fit. The mania symptoms I was less sure of. I certainly had never been delusional, had never experienced hallucinations, and had never lost contact with reality. I was sleeping well--likely because, in addition to doing tons of writing, I ran about 20 miles a week and lifted weights three times a week (even when I was depressed). There were no weird spending sprees (I didn't have the money for that anyway), and while I'd been in a couple of fights (risky behavior per the DSM) the previous year, they'd both been self-defense. I was chasing women very hard (and succeeding!), but I was 26, so that's hardly abnormal. (I've long considered the emphasis on sex in the mania side of the DSM's bipolar diagnosis to be hogwash, likely determined by some very unsexed psychiatrists with deep Freudian issues. I'm not really joking either.) What's more, I had never been hospitalized for anything in my life, except for a broken nose I had operated on when I was 14.

In other words, I had none of what Sascha Scatter of The Icarus Project called "superpowers" in the New York Times yesterday.

But I was agitated at times and had a classic bad Irish temper (both since childhood) and I had certainly been feeling jolts of energy and racing thoughts. In retrospect, I have to wonder if getting wrapped up in the joy of stringing words together and having them make sense at longer than short story length for the first time in my life didn't lead to the racing thoughts and energy. That's certainly something for me to chew on late at night these days.

Anyhow, I went to see the psychiatrist like a good patient and walked out a half hour later with a diagnosis of manic-depression and a scrip for Lithium (Lithobid as I recall).

For the last few years, there's been all sorts of news around the increased diagnosis of bipolar disorder in American culture. Most of the attention has been paid to the alleged child bipolar disorder. But among adults, bipolar disorder has exploded as well, doubling between 1993 and 2003. Most of the increase among adults was among women and, to go by Zimmerman's paper, it's pretty clear to me that most of these diagnoses are similar to mine--depression plus agitation and a certain rage. What's called bipolar disorder type 2 these days. I suppose the psychiatrist who diagnosed me figured I was experiencing some hypomania and that he was doing me a favor diagnosing me with manic-depression and putting me on Lithium.

When I told my parents about all of this a few days later, they were blown away. Like me, they didn't really know what manic depression was, but they sure weren't expecting that diagnosis.

In the almost 19 years that I've been diagnosed with bipolar disorder, I never questioned my diagnosis until last fall when I'd been off meds (at my psychiatrist's urging) for several months and was clearly non-symptomatic for depression, mania and hypomania. And, that's when my psychiatrist told me the ugliest words I have ever heard in my life: "Once diagnosed, never undiagnosed." I've written about that bit of business before.

But, now, I've got all kinds of questions. I wonder if any other folks do as well. And, I've got to think that given how some leading researchers are insisting on a bipolar disorder prevalence of 4 percent to 5 percent (as opposed to NIMH's 2.2 percent) among American adults and given how many leading researchers are arguing for even broader diagnostic criteria for bipolar disorder (yep, they want a bipolar disorder type 3) that there are millions of people being diagnosed with bipolar disorder who don't have bipolar disorder, at least not in anything approaching the classic sense of the term.

Someday, I'll get into why I didn't question my diagnosis for so long. I am not in the mood for that now. I find it depressing.

I want to again stress that I am not attacking anyone's views on bipolar disorder here. I am just putting some things in the public realm that I think have to be in the public realm--some much needed healthy skepticism. And, let me stress again that I have not reached any conclusions about my own diagnosis. I just have lots of questions, very painful ones, especially given that I've lost jobs and lovers over my diagnosis and have taken 18 years of meds that I may well not have needed and that have caused me numerous problems and may have compromised my long-term health.

Posted by Philip Dawdy at May 12, 2008 12:05 AM
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Back when I contracted for social security, so many people got the label bipolar that it was considered synonymous with a fraudulent claim, which is unfair to the person labeled but as the guy who did psych evals for social security wrote here recently, bpd is almost always a diagnosis when applying for ssi or ssdi and the label almost never holds up under the mildest scrutiny. So of course when I got the label, I thought it was a bit of a joke until I realized what sort of discrimination I would face for the rest of my life. One reason I no longer believe in the label at all is because no one can tell anyone else whether they have it or not. It's just too vague and all inclusive to be a medical disease, imuho.

Posted by: Sally at May 12, 2008 03:58 AM

Geez, Philip, your story sounds an awful lot like mine...I was on meds for two years, put on a ton of weight, and now I've been off most of my meds for three years (still trying to taper off of trazodone) with nary an episode in sight, other than some depressive withdrawal symptoms. Like you, I have a lot of questions.

What I don't get is why you can't be undiagnosed. Is the psychiatric profession that insecure that mistakes cannot be owned up to?

Posted by: Jazz at May 12, 2008 05:17 AM

Fantastic post. I'd say you have kicked off Bipolar Overawareness Week in style. Thanks for sharing your story; I am getting the feeling such cases are more typical than we would like to believe.

Posted by: CL Psych at May 12, 2008 06:37 AM

"Of some years for here, a word was entering in my correspondence: bipolarity. However, I have six decades of existence, and during at least five of these decades I never had heard to speak of this. Have the contemporary society produced a new illness? Or is it manufacture of the pharmaceutical industry? Until little time, a level of glicemia between 70 and 120 was permissible. Above of the 120 it was considered that the patient was diabetic. Suddenly, in US somebody decreed that the maximum level of glicemia is 110. Automatically, it increased the number of diabetic... and the medicine consumption for diabetic. United States dixit.
Following day, the limit for diabetes in Brazil was 110. Some doctors want it 90. Some rare ones accept 120. More a little, and everybody is diabetic.
For joy of the pharmaceutical industry. No! Bipolarity is not a new illness. It would be the old maniac-depressive psychosis. Until, there intelligible. A change in the nomenclature. It was only this, all good. It occurs that I started to receive mails of people that alleged to have been attacks for the such of bipolar disorder. The word started to arrive from correspondence coming from US and started to invade the national vocabulary.

Today 135 children with "bipolarity" are taken care by the Hospital of Clinics of São Paulo. In 1995, they were 22. According to Lee: "I was, doctor-supervisor of the Service of Psychiatry of Infancy and of the Adolescence of the College of Medicine of the USP, "our amount of diagnostic increased one ten times in relation to that time". But Lee shows a certain skepticism: "There are those who think that everything is bipolar disorder".

The pharmaceutical industry, that has already conquered the adult market, is investing now in infancy. The children are swallowing, throat below, forced for parents and doctors, the bipolarity industry."
Janer Cristaldo

Posted by: Ana at May 12, 2008 06:47 AM

I had a somewhat parallel diagnosis story to yours, and eventually all of the same questions about the diagnosis itself. I came to the conclusion the diagnosis was wrong, and have, to some extent, gotten agreement from doctors (my prescribing doc, after 1 year off meds, said without prodding that it "may be reasonable to question the original diagnosis" though she personally was unwilling to do any official questioning. My therapist stopped billing as bipolar and agreed the label no longer applied, but remained agnostic about the validity of the original application).

Posted by: tilting at windmills at May 12, 2008 06:53 AM

Hi,
Some thoughts from Europe, where things go more the opposite way.

I've been getting psychiatric treatment for over a decade. Originally I was diagnosed with recurrent depression (ie unipolar depression). I was doing ok on anti-depressants for some years - occasionally, the meds would stop working, so they would give me another. I got mild depressions frequently, but as long as I wasn't incapacitated or in hospital, that was ok with me, I coped.

However, over time, there were some things that didn't make sense. I was getting, basically, hypomanic for short periods of time (a few days) quite frequently, and not always pleasantly. Some of my depressions were very agitated - something that I was not when not depressed. And so on.

About a year ago, I had another massive depression, yet another hospitalisation yadda yadda. The doc told me that I had bipolar symptoms, but they were sub-threshold for BP2, so my Dx would not change, but notes would be added.

The information a BP1 or BP2 dx communicates is that this person's illness is one where the first step is to control mania, and worry about depression afterwards. Whereas, what the dx of depression with a note of sub-threshold bipolar symptoms communicates is that this patient's main problem is depression, and the mania is less of a issue.

There are, apparently, lots of people in my situation who are DXed as recurrent depressives, but have some element of bipolarity in there too.

As a teen, I had cyclothymia, basically, and the depression part grew into a Monster Psych Problem, the hypomania did not.

The doc gave me lithium on top of the anti-depressant. Not only did it lift the depression, but the mania-related "crap" is now GONE. No more being restless and agitated when mildly depressed (I can cope with mild depression, the restlessness less so). No more getting "high" and giggling at my desk at work for hours. Or making stupid plans. Or making a total ass of myself socially. Or being really really angry and iritable for no reason. My moods are far less volatile and more "even". And I realise that it was, in fact, permeating all sorts of parts of my life that I didn't realise. Life is just so much better.

You'll notice, no anti-psychotics. AFAIK these are only prescribed if mania is an issue in and of itself.

I feel bad for people like me out there who are still working their way through anti-depressants and wondering why they make things worse for them or don't work, and have no idea why, when lithium might fix the problem.

I have no idea if it's going too far the other was in the USA. Certainly, mood stabilisers are NOT going to help you if mood is not the problem! And lithium can be pretty dangerous. I know I need it as otherwise I go batshit crazy (mixed depressive episodes, yuck), or end up writing suicide notes and the like.

I think more attention is now being given to bipolar symptoms that do not involve Type 1 mania or psychosis - the BP2 continuum or spectrum, where illness is heavily weighted in terms of severity and frequency in favour of the depressive side.


Posted by: DeeDee Ramona at May 12, 2008 07:26 AM

From what I have read and researched, the diagnosis of bipolar disorder began to grow as the criteria for the diagnosis of schizophrenia became more strict.

In the olden days, before the advent of the first major psychotropic drug, Thorazine, practically everyone who went into a mental hosptail was diagnosed as schizophrenic. So in the mid-1950's, when Thorazine became available, everyone in a mental hospital was given Thorazine because it was labeled as an antipsychotic and, of course, everyone in the mental hospital was psychotic or schizophrenic, according to their charts!

So, from the 1950's until about the 1990's, practically all those in mental hospitals were Thorazined and Haldoled to the nth degree. There were some who were labeled schizophrenic who were tried on lithium and, according to some doctors, seemed to benefit from lithium which was then added to the Haldol or Thorazine. The term bipolar did not exist yet and occasionally these people were labeled as manic depressive but it was not a common diagnosis. Most were still 'schizophrenics' who were benefitting from lithium which was added to their haldold/thorazine. The U. K. doctors were more likely to diagnose 'manic-depression' beginning in the 1980's than the U.S. docs. The U.S. docs still called almost everybody schizophrenic unless they were an outpatient who was 'depressed'. Then they were given an antidepressant and diagnosed, not as schizophrenic, but as 'depressed'.

Then, Prozac was introduced in Dec. 1987, and suddenly many people were going manic and psychotic on the new powerful serotonergic drugs. At first, until about the mid 1990's, these people were then diagnosed as "latent" schizophrenics! But then, this gradually changed to where they were diagnosed as 'bipolar' or 'latent bipolar'.

In the earlier court cases involving criminal behavior on the Prozac/SSRIs, psychiatrists were testifying that the bipolar would never have manisfested itself if that person had not taken Prozac/SSRIs. On www.SSRIstories.com/index.php there is a case of a woman named Paula Pinckard in Louisiana who was given only a three year sentence after she shot to death her 11 year old daughter. Psychiatrists testified that the Prozac she was taking before the shooting caused her behavior. They said it acted as a catalyst for a hidden bipolar condition. They testified that if she had not taken Prozac, her condition may never have manisted itself.

The Pinckard case is listed on the Index along with the other 17 "won" cases right below the 43 school shooting/incidents so scroll past the school shootings and you will easily find this case. The full media article is available.

Now, with the introduction of the new atypical antipsychotics & the epilepsy drugs for mood disroder, doctors [and patients!] were encouraged to look for every little sign of bipolar disroder. The criteria for bipolar became looser.

So while NAMI and those kind of groups were fighting to reduce stigma of mental illness, they were at the same time encouraging everyone to be medicated to the hilt thus causing all kinds of abnormal behavior in those sensitive to medicines, especially the SSRIs. So now we have www.SSRIstories.com where 2,295 cases of aberrant behavior are recorded and even Eric Harris, according to three experts on Columbine as reported in the Denver post, said he was 'bipolar' because he felt better after he discontinued his Zoloft and before he started on his SSRI Luvox. So the SSRIs are really giving manic depression a bad name not to mention the terrible tragedy of all the people dead and wounded.

Posted by: Rosie C at May 12, 2008 08:24 AM

One psychiatrist used alcoholism in the family tree (Great Grandparent)as a tool for dx in my daughter; saying that "they were just self-medicating back then". Sometimes,I think it appears that doctors have made dianostic criteria and diagnosing people based on their own opinions, or thoughts, rather than evidence of the criteria for bipolar mania/depression etc.

Thank you for sharing your story Philip, it is a heart-wrenching one, and I hope the next 18 years bring you what you deserve, good things and everything you want.

Posted by: Stephany at May 12, 2008 09:35 AM

From what you're saying, Philip, it doesn't sound like there was much justification for diagnosing you with bipolar II, let alone bipolar I. And how can anyone seriously believe that 4-5 percent of the population needs to be on lithium or seroquel or whatever?

I feel strongly that psychiatrists' focus on external, very much socially mediated behaviors like sex and shopping (who decides what qualifies as "hypersexuality" or a "shopping spree," anyway?) is a big part of the problem. A good initial screening question might be: "Have you ever thought you were really, truly going insane? If not, chances are you don't have bipolar disorder."

Posted by: Garth at May 12, 2008 09:57 AM

"Hi,
Some thoughts from Europe, where things go more the opposite way."

I didn't understand it. Could you explain, Dee dee, the differences from US and EU?

Thank you.

Posted by: Ana at May 12, 2008 10:00 AM

Ana> In Europe, afaik there isn't a tendency to overdiagnose bipolar disorder - it is only diagnosed when the ICD-10 criteria are strictly met.

The concept of the bipolar spectrum is a relatively new one and not covered by either ICD10 or DSM. You can do two things with someone like me who is mainly depressed but has a "degree of bipolarity": leave the Dx as Depression plus some notes on the bipolar-type symptoms and simply treat the symptoms appropriately, or change the Dx to BP2 even though the criteria are not met.

The approach taken here in Europe seems to be the first. Perhaps the second is being taken in the USA? I wouldn't see that as a good thing.

Posted by: DeeDee Ramona at May 12, 2008 10:25 AM

Thanks for sharing. I have to admit it's ugly to think of this happening in every medical clinic in America where there's a shrink or even just a GP-- really. Agitation, racing thoughts, depression, the thrill of creativity, temper -- gads -- which one of us here on this blog hasn't had these things? For this we get labeled and pigeon-holed for life?! And asked to take some darn potent stuff that's not well understood? And the doctors think they're doing us a favor? I say "Bollocks. Fie upon them!" It's time to fight back and rise up in arms. It's got to stop or very dreadful things are going to happen -- they already are. I'm really sorry for the many of you out there who have had to deal with this rubbish. I wish I could see a bright side to it but really it's hard to do so.

Posted by: Sara at May 12, 2008 03:30 PM

Philip - thank you so much for putting this info out there. This has been my question for the last 5+ years. I have no family history of mental illness. My bipolar diagnosis came after abruptly stopping and restarting Paxil several times. I had this wired/ceffeinated feeling that really interferred with my sleep but I felt great after being depressed and didn't really miss the sleep. I tried Zyprexa and Effexor for a year and then quit. After about 4 wierd months, I started waking up at 3:00 am, feeling like I had 20 cups of coffee and other sypmtoms that could point to hypomania.

Went back to the bipolar Dx and tried Seroquel and lamictal. Serious akathisia made me question if many of my sypmtoms could be drug affects and withdrawal affects.

Even at 9 month off clonazepam, 2 years off Seroquel, and 5 years off any antidepressant, I spend most of my time feeling like I've had 20 cups of coffee and sleeping 4 to 5 hrs a night. Have you (or others reading this) run into anything like this in all your research? I've found somewhat similar stories over on paxilprogress.org.

I wonder if Group Health, my provider for the past 35 years, would consider assessing if they have issues with dipolar over-diagnosis.

Thanks,
Camas


Posted by: Camas at May 13, 2008 06:47 AM

Hello Phillip,

"Someday, I'll get into why I didn't question my diagnosis for so long."

I still remember the day I was diagnosed. At the end of the third week inpatient I was told I was manic depressive for life. I was told that without drugs and therapy that I was basically doomed. I still remember my first thought after she told me. Bullshit. You have no idea what's really wrong with me.

The second time I was hospitalized for suicide, my mother called me on the ward on Thanksgiving Day, to tell me that she too had been depressed and suicidal, all her life.

The illusion that my depression was a unique private personal problem was gone. I did not need hard science to tell me there was some hereditary something going on.

I feel that the older classification of manic depression is better. I feel that suicide attempts indicate a real issue. I think that the super human powers, reckless behavior, internal rage, rambling incoherent speech is real mania and definitely a real problem for some people.

As for the bulk of the Bipolar Spectrum psychiatry has medicalized normal behavior and turned it into an indicator for a genetic incurable disease. I don’t believe in Bipolar 2, dysthymia, cyclothymia, BPD NOS. None of those diagnoses existed when I was Dxd with manic depression The Bipolar hammer just keeps hitting smaller and smaller nails and that is one of the primary reasons bipolar is over diagnosed. When will common sense re-enter the minds of your average psychiatrist?


When I was Dxd you had to be seriously disabled by mental illness. Weeks of testing and observation went by before my treatment team concluded their findings. Now people not only get Dxd with Bipolar on their first outpatient visit they get scrips for some of the nastiest meds to ever come out of a lab in the same visit. I think it’s irresponsible, reckless. A mental health diagnoses belongs to people who are very mentally, emotionally and spiritually unwell. Not to someone a little jagged and jumpy on sleep deprivation, caffeine and stress or to someone who is experiencing depression because of loss or hard times or to someone reacting badly to a weekend party binge. The lesser forms of Bipolar Disorder in adults is what people come down with from suffering too much of the American Lifestyle.

Shopping sprees and sexual behaviors are not rigourous medical criteria for a disease. A disease that is diagnosed solely based on consensus and not a conclusive laboratory test.
( We can pretty much thank KR Jamison and her moody memoir combined with her position in academia for that. Anything she says about bipolar becomes catechism and hard science)

Everyone is entitled to good days and bad days. Everyone is somewhat bipolar at some point in their life. The notion of two poles, the highs and the lows, that is experiencing the fullness of life and being a human. Life is not being on a perfectly even keel every single day. You should be exuberant when life is good and going your way, it's perfectly natural to be depressed from time to time or when life gets you down.

I no longer believe in bipolar disorder. My experiences indicate that the mania and depression are two separate issues. What healed my depression permanently, was not the same stuff that healed my mania. The depression went away first, then the mania a few years later. If bipolar works the way they say, it would not have been possible. Yet it happened anyway.


Where I lose calm and reason is talking about, even thinking about, childhood bipolar. There is no such thing. This drugging of our children with psych meds is abuse and neglect that is going to have serious repercussions someday for those children's minds and bodies.

As an adult, you pay your money, you take your chances. You have enough life under your belt to make some critical thinking decisions. Unless you are an acute care inpatient or under court order you have the ability to say 'no' to a doctor, or to choose to conduct a drug/mood experiment on yourself to see if you can function better.

As someone that had very unpleasant experiences under the influence of forced psychiatric drugging, I die a little inside every time I hear of a 7 year old girl on lithium or an 8 year old boy on an antipsychotic. It makes me want to scream. A child’s personality is not developed enough to determine whether or not a personality disorder has manifested. Their slates are clean, their minds too brand new to be able to scientifically know for sure that they have a personality disorder for life. If it were up to me the Dxing of Bipolar and the resulting ‘treatment’ of children would end now, as in right now.

If I were religious I would thank god every day I only suffered 6 months of being drugged. Having experienced both, if I had to be punished by psychiatry for a suicide attempt again, I would rather be whipped for it and get it over with. It’s less damaging psychologically and physically.

Another issue continues to be that of lack of recognition of being healed of bipolar. Where is the hard science that proves Bipolar is uncurable? How long does a person have to be cancer free before the doctor declares the person has ‘beaten’ their cancer? How long does a person have to free of mania and depression to no longer be a manic depressive? How come I can get over PTSD but not bipolar? What’s up with that? When will Oprah start hosting people that have fully recovered from mental illness and live psych med free? Is that not a subject of social interest when more and more people are being Dxd every day?

Posted by: Jane at May 13, 2008 11:25 AM

Jane, it is perfectly true that "everyone is entitled to good days and bad days", but I do not understand how you can possibly claim that is all there is to bipolar disorder. Yes, it's natural to feel good when life is good and to feel bad when life is bad. But being sucked into a world of delusions for no apparent reason, or wanting to kill yourself when life should be going fine - that is a different thing entirely. It is also also part of being human for too many people, whether you choose to believe it or not. You are simply avoiding the issue by pretending it is all a matter of life's ups and downs.

Posted by: Garth at May 14, 2008 07:36 AM

It is unbelievable, and speaks to the terrible emphasis (and I do mean terrible) that all of the professions place upon diagnosis.

And they're often wrong, especially the young ones. When I was younger, always focused on the family systems, I missed a bi-polar dx and the MD was shocked (and judgmental). He stabilized her easily and I felt like a jerk.

So it goes both ways is what I'm saying. You try to change the system, improve the ecology, and you find, indeed, a little lithium goes a long way.

Never happened again.

Posted by: therapydoc at May 15, 2008 08:06 PM
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