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Comment by Pelic4n | Hacker News Reader

Sorry but that attitude is extremely dangerous. Maybe you have a less severe case that's manageable without treatment but that's not the case for everyone. Mania states are actively brain damaging and can blow into full-on psychosis. There is no lifestyle change, diet or essential oil that's going to stop that from happening for folks with a severe bipolar disorder, which is absolutely a disease since it destroys your brain if left unchecked.

Spreading such misinformation can lead to people not seeking treatment and getting hurt. Your case is absolutely not the canonic case for people with bipolar disorder.

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Less sever case!!! Ahahahahhah! Uhm, no, I assure you this is not the case. Hospitalized four times, suicide attempts, psychosis, hallucination, on permanent disability, my mother and brothers have it and attempted suicide, my nephew, suicide. At one pint I was on lithium, zyprexa, lamictal, and prozac all at the same time. They also thought I had MS at times because of all the neurological stuff that was happening.

You can say what you want, but they found I have problems metabolizing amino acids (BH4 deficiency) and this is fixed by a low protein diet. (More technically, I have GCH1 deficiency.) Now I only need Klonopin in emergency cases. But watching my exposure to oxidative stressors is important because it destroys BH4.

And you do not even know what causes Bipolar disorder so how the hell could you know what might help it? And this is another problem, no matter how good we feel with lifestyle changes, no one will believe us or even think we were ever sick. They tel me stress is a trigger for my illness yet they make me homeless and do not provide me with stable housing.

Different treatments affect different people differently. This isn't particularly controversial, but the layman suggesting that they know better than scientists/doctors is kind of dangerous. There is of course room to be skeptical and ultimately you know what's going on better in your head than anyone else does, but that's not really actionable across an entire population of people suffering from something similar to you.

It's also dangerous because you're telling people they don't have a problem they need to address and that if they do address it, they just need to eat differently, neither of which are applicable broadly to people with bipolar disorder. Medications that didn't work for you might work for them and are worth pursuing.

There is a problem with how we diagnosis illness today. We diagnose off of symptoms and symptoms only. The reason this is a problem is there can be multiple different things that cause identical or nearly identical symptoms. Today we think of those multiple things as one, but they're not one thing, they're different things. If they were the same, they would have the same cure.

Parent knows he has a BH4 deficiency. Instead of calling that bi-polar, we could instead call it eg, 'bi-polar type 5' out of, say, 12, where 12 is the number of cures we've found for bipolar. Eventually, as time passes, we can map all if the cures, mapping all of the types. However, we can not do this if we think of an illness as a singular thing. This person has one specific type of bi-polar, and just because it only cures a subset of bi-polar patients does not mean it should be dismissed. It should be documented so we can have a list of cures.

Once there is a list of cures a doctor can walk through this list and eventually find the correct cure for the patient. Once everything is mapped it becomes possible to have a 100% cure rate. This is something no single pill can do.

This is why we should not force a one shoe fits all approach. It is toxic behavior to dismiss a solution just because it only works on a subset of patients. If I had bi-polar I'd be glad to know their story, so I could try it and see if it would work on myself. Dismissing psychological solutions is a toxic behavior we as a culture share. Let's do our part to make the world a better place and end this behavior.

This doesn't deviate from what I said at all.

Not everything said has to be in conflict. I'm guessing you're from Reddit? Welcome. ^_^

There's a reason which you chose to respond to my comment rather than creating a new thread or responding to a different parent comment.

I was unaware, so no reason.

> the layman suggesting that they know better than scientists/doctors is kind of dangerous

That's a strawman.

Thank you. Yes, a strawman and so frustrating since I literally have the metabolic and genetic proof that I found out what was causing my mood disorder. And as a result the doctors are providing better and different treatment. This what this "layman" discovered.

Do you or don't you have a disorder? In the first post you made in this thread you very clearly stated you don't. Now you're saying you do.

The problem with your post is that you very discretely stated that you don't have a disorder even though you admit to being bipolar. Despite the fact that your "difference" has pushed you to suicide attempts, psychosis, and more. The fact that an effective treatment for you specifically was a low protein diet (which by your own admission still didn't remove the requirement for medication) doesn't make it not a disorder.

The attitude is dangerous because you are spreading misinformation about something you are suffering from, which in turn can result in someone else being harmed.

The viewpoint that bipolar (and other brain differences) is a difference rather than a disorder can enable a person to have self compassion, and find peace and self acceptance, even though the condition will continue to affect them.

The idea that it’s a disorder and can be treated as such is a reasonable hypothesis for medical science to pursue, but that is all it is. Outside of that it’s just a source of stigma and misinformation.

The viewpoint is based in the reality we live in where we stigmatize abnormality. The correct response isn't to try and normalize abnormality, but to try and remove the stigma surrounding it. Suggesting that it is normal actually creates a stigma for those who are suffering from it from pursuing treatment because they're supposed to feel that way because it's "normal."

Who said anything about normalizing abnormality?

If by abnormality, you mean traits that are far from the center of a population normal distribution, then I agree that this is essential information for a person to have about themselves. Nobody is encouraging people to think they aren’t different from the norm, when they in fact are.

Abnormal, disordered, or diseased are very different things, and should not be confused.

As for treatment - nobody should seek treatment because someone else has told them they are abnormal, or because they are not close to the center of the bell curve for a given trait. This is simply a bad reason.

People should seek treatment if it will help improve their quality of life, and they are willing to accept the trade-offs that come with it. Whether they are ‘normal’ or not is irrelevant.

> Who said anything about normalizing abnormality?

It's implicit in the original comment i responded to.

> If by abnormality, you mean traits that are far from the center of a population normal distribution, then I agree that this is essential information for a person to have about themselves. Nobody is encouraging people to think they aren’t different from the norm, when they in fact are.

People are encourage others to think they aren't different from the norm, this is prevalent throughout society at large, not just in cases of mental wellbeing.

> Abnormal, disordered, or diseased are very different things, and should not be confused.

Disorders and Diseases are both abnormalities.

> As for treatment - nobody should seek treatment because someone else has told them they are abnormal, or because they are not close to the center of the bell curve for a given trait. This is simply a bad reason.

This isn't true. Symptoms can manifest without an individual noticing it themself. Another trusted person telling you about these abnormalities to your behavior or physicality is a perfectly valid reason to seek treatment, even if it doesn't result in anything.

> People should seek treatment if it will help improve their quality of life, and they are willing to accept the trade-offs that come with it. Whether they are ‘normal’ or not is irrelevant.

Which was largely my point from the get go. The exception being cases where their lack of treatment being a danger to others.

You seem to be someone who has a very deep trust in medicine and in particular psychiatry to produce good outcomes for people.

I can respect that difference of opinion.

I don't have a particularly deep trust in either medicine or psychiatry. My personal experiences with dealing with humans in either has been largely negative. That said, I largely attribute that to the people i've interacted with and not with medicine in general.

It’s unclear why you’d be such an advocate for unquestioningly seeking treatment if you neither trust medicine in general, nor have had good experiences with it yourself.

In no way do I think my symptoms are normal and just different. What I am saying is that what causes my symptoms is a different response to a similar environmental input that most people do not react to, ie, diet.

I want you to consider it being like an allergy, not that I have some sort of histmagenic response, just that when you take my trigger away I have no symptoms.

I only have the disorder when I have symptoms. You get it? Those symptoms are caused by my diet and environment.

I am not "Bipolar" because everyone is bipolar, every one has these states, mine are just more extreme when faced with environmental challenges.

If someone has a peanut allergy do they have a disease or a disorder? no, they have a different response when exposed to peanuts.

I use the term Bipolar Disorder because that is what people understand and it is the current medical terminology.

As far as your idiotic comment about the medication I need everyone and a while. Well, have you ever taken as aspirin for a headache? Same thing. The aspirin is only needed when you have a headache. Do you have a headache disorder still?

What I am suffering from was clinically diagnosed. I am no longer considered by my doctors to have Bipolar Disorder. Isn't that crazy!? After 35 years of being told this?

> If someone has a peanut allergy do they have a disease or a disorder? no, they have a different response when exposed to peanuts.

They have an "allergy," which is just another medical term like disease or disorder to define something which is abnormal which negatively affects life. If everyone had an "allergy" to peanuts then we'd just call them poisonous.

> As far as your idiotic comment about the medication I need everyone and a while. Well, have you ever taken as aspirin for a headache? Same thing. The aspirin is only needed when you have a headache. Do you have a headache disorder still?

No, because a headache is atypical, while bipolar disorder isn't, like other mental health issues. We define bipolar disorder differently from mood swings. If someone with epilepsy finds improvement in their condition from following a ketogenic diet, that is also them finding an effective treatment for their condition. It does not mean they don't have epilepsy.

> What I am suffering from was clinically diagnosed. I am no longer considered by my doctors to have Bipolar Disorder. Isn't that crazy!? After 35 years of being told this?

What's important ultimately is you found something that works for you and makes your life better for it. Your insights can be valuable but shouldn't be seen as prescriptive to people that aren't you.

You say bipolar is atypical, but you are wrong. I can go months with no symptoms, just like people with headaches can go months without one. Then I have a trigger; stress, diet, pollution, etc.

and I have never said that my fix was for everyone. Not once ever. It is that thinking that kept me sick for so many years in the hands of the psychiatrists.

Thanks for your insights and sorry for having supposed you had a less severe case, but all of that happened to you and you think it's not a disorder or a disease ?

Disease: A particular distinctive process in the body with a specific cause and characteristic symptoms.

Disorder: Irregularity, disturbance, or interruption of normal functions.

Syndrome: A number of symptoms occurring together and characterizing a specific disease.

I do not care which it is. I just focused on my symptoms and what made them worse and what made them better. To me is is a difference, that is the best way I can put it.

Stop labeling someone who doesn't want to be labeled.

> Spreading such misinformation can lead to people not seeking treatment and getting hurt.

Misinformation? Unless you have expert knowledge in that domain - and unless the alternatives podgaj describes have been exhaustively eliminated by a body of peer-reviewed research - you have absolutely no justification to label that as misinformation.

Calling bipolar disorder not a disorder and saying it can be self-treated with lifestyle & diet changes absolutely is misinformation. Ask any psychiatrist.

I do not need a medical degree to say that, in the same way I do not need a medical degree to say that self-treating cancer or any serious illness with diet and lifestyle change is misinformation and dangerous.

These statements taken as face value are incredibly dangerous. I have family relatives that did not seek treatment for psychiatric illnesses (actually diagnosed bipolar disorder) on the basis that it can be self-managed by diet, lifestyle accomodiations and "natural medicine" such as essential oils. They posed a threat not only to themselves, but to their 12/13yo children, almost stabbing them with a kitchen knive during a manic rage episode.

Bipolar disorder is not a difference in executive function, it is a debilitating, life altering illness which can makes the subject a danger to themselves and others if left unchecked.

This kind of misinformation regarding psychiatric illnesses kills.

I'm sorry about your family. But extrapolating from their uninformed use of essential oils to say that the psychiatrist's recommendation is always right is just swinging from one extreme to another. As podgaj said elsewhere,

> I literally have the metabolic and genetic proof that I found out what was causing my mood disorder.

We aren't talking about essential oils, or anything close. podgaj also says pretty clearly that the psychiatrist's recommendations were doing him no good at all. Don't let your personal grief harm others -- in this case, by denying that there is any alternative to using the antipsychotic medication that a psychiatrist would recommend.

> Ask any psychiatrist.

Only if the evidence is totally conclusive, as I mentioned elsewhere. Otherwise, asking a psychiatrist will only get you 10-20 year old data from the textbooks they read in school, and whatever they've learned to try and keep up to date since then. That's great when you have a fairly normal problem with a straightforward solution and no strange factors in play.

People seem to think medicine is more or less solved, like physics or computer science (ha) -- it's not. We don't even know why people tend to get colds in the winter! Even for that, the best we have are competing theories.

Here's an example: https://pubmed.ncbi.nlm.nih.gov/22340278/. It's about schizophrenia, but as a psychiatric illness it's close enough to illustrate my point. There were even bipolar patients included in the group, though they didn't contribute to these conclusions. A 20 year longitudinal study of 139 psychotic patients; here's a key quote (SZ is shorthand for schizophrenia):

> At the 2-year assessment there were no significant differences in severity of psychosis between SZ on antipsychotic medications and SZ not on any medications. However, starting at the 4.5-year follow-ups and continuing over the next 15 years, the SZ who were not on antipsychotic medications were significantly less psychotic than those on antipsychotics (p<0.05).

> In addition (see Fig. 1), starting at the 4.5-year follow-up and continuing at each assessment over the next 15 years, a significantly larger percentage of SZ not on medications experienced a period of recovery (p<0.01), which also requires adequate work and social functioning.

Dependence on experts can cause irreparable damage, too.

> and unless the alternatives podgaj describes have been exhaustively eliminated by a body of peer-reviewed research - you have absolutely no justification to label that as misinformation.

That's not how that should work. If I say that my farts cure cancer, it's not the job of peer-review research to disprove me, and until then we all just assume that the information I'm giving is good.

> until then we all just assume that the information I'm giving is good.

Fallacy of the excluded middle. There's other alternatives to a) saying it's outright false and b) saying it's outright true. I'm saying it shouldn't be labeled "misinformation" without extensive evidence to back it up, just as you're saying it shouldn't be labeled "truth" without the same level of evidence.

Instead, it's actually possible that we could discuss the theory as if it might be true, or false, until there's sufficient evidence to rule out one or the other. It's Pelic4n's refusal to do this that I take issue with.

Ok, so misinformation may be too strong a word - really it's just unfounded, so that labeling IS wrong. I still think we need to treat it as false until we have evidence it works. I'm sure you wouldn't treat my farts as curing cancer if I made the claim unless there was proof.

Glad we agree on the essentials. There was anecdotal evidence to back up the claim, however; it's not "unfounded." While that's not enough evidence to make any real claims, it is enough evidence to have a conversation.

A conversation is a prelude to an exploration, and an exploration is a prelude to a hypothesis, which is the beginning of an experiment. An experiment is where we obtain the evidence to begin to say that it might be true, or false.

It's entirely possible to think about something and even discuss it without labeling it as either true or false - to be simply agnostic. We don't need to jump to conclusions. If we aren't jumping to conclusions, then it would be incorrect to say that we treat it as false, just as it would be incorrect to say that we treat it as true.

I recommend looking into the few longitudinal studies for dopaminergic illness involving anti-psychotics -- the new "front line" bipolar treatment -- and long term prognosis. The severity and frequency of episodes increases.

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