Very interesting read. I always wonder about the criticisms of new solutions that are working as magically as they seem to be in the article. The kids started taking antibiotics, and soon thereafter had obvious improvement that led to them being cured eventually. Of course you can say sample size wasn't large enough to make any conclusions, but what is their (critics of PANDAS) answer to the fact that the antibiotics worked? Is it pure coincidence? Or some other mechanism in play?
If it was another mechanism in play then at the very least I would think that autoimmune treatment should be used as a backup plan in case typical OCD, ADHD, etc. drugs aren't working as shown through the article.
Of course I am not a medical researcher so this may have an obvious answer, but I always wanted to know how critics go beyond the "n=1" argument to disprove new solutions that seem to work perfectly.
They are, but ADHD is particularly unresponsive to other interventions. So those drugs are usually what ends up being the only effective treatment anyways.
This is covered in the article: these rare chidhood neurologial diseases are considered multi-factorial and antibiotics may or may not work in some cases, at some stage of disease onset.
I would be extremely wary of self-reported miracle cures for chronic diseases as well. 'Liberation treatment' for MS had many fantastic reports of patients throwing away their crutches and the like but of course turned out to be totally ineffective.
The article states as a fact that in present all mind illnesses are get blamed on the mind and not on the environment or body but we read everywhere that the causes for many such illnesses are in the body or environment.
The problem IMO is that it takes a long time until correlations and later causation are found
I thought the nazis proved that it /wasn't/ genetic strongly by murdering nearly every diagnosed schizophrenic under their domain. The rates were unchanged.
Maternal nutrition seems far more likely given the prevalence being lowest in wealthier countries and higher in poorer countries on maps. Granted it may technically be epigenetic.
All they proved is that murdering all people (that they could find) with schizophrenia doesn't lower the incidence rate of schizophrenia. This paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/ discusses a few of the reasons why that could be the case, but obviously it doesn't make grand claims.
Interesting that sufficient complexity may also work as a reason. I would have expected some deceease in a genetic context but I suppose sickle cell anemia is another example with simpler structuring given it is partially adaptive and partially maladaptive given one means malaria resistant blood and two means concave red cells bad at their job. Even if malaria vanished a thousand years ago the trait would probably stick around today. Thanks for the link and furthering my understanding.
I wonder how common "summed" traits are where a few to some are good to have while too many or too few is a bad thing. I heard of one computer example which by no means biologically proves anything apparently too high a learning rate caused some neural networks to start making increasingly bizzare associations and caused the convergence rate to plummet instead of improving past a certain point as spurious correlations resulted in incoherence. The schizophrenia thought disorder resemblance was explicitly noted.
Also people with schizophrenia very probably have fewer children than average.
So if it has a genetic component, it would be mainly their 'carrier' siblings who would pass on the trait to later generations.
As we come to understand how much genetic expression is tied to environmental influences, such as with epigenetics silencing certain genes, all of these genetics/environment dichotomies are going to become less distinct. We need to talk about them as genetic susceptibility plus environmental trigger. For instance, say the environmental trigger is something extremely common, like the common cold. Even in carefully built twin studies there would be a high likelihood of the trigger occurring, which would make it appear heavily genetically caused, but the genes alone would not be sufficient to cause the condition.
I believe that most psychological "issues" arise from more rationally explainable underlying problems than our current psychological understanding is able to explain.
We lack the models to analyze and research how different diagnoses are related to each other.
Psychology today is a bit to obsessed with the surface structure of the mind, and the behavior that it causes. We need something like theoretical physics for the mind where we model more underlying functions not surface behavior. The mind might however be so complex that it is impossible. But on some level i think there is abstraction levels that can be modeled.
It might be impossible to model with the technology that we have right now, but it cannot be impossible at all. Unless you believe consciousness contains some amount of magic, in which case all bets are off.
It might be impossible in the same way that it is impossible to beak an RSA key. To many underlying components making it impossible to extract the underlying components unless you already know what they are.
What if you grow up around insane people? What if you are daily surrounded by people with faulty reasoning and illogical, biased conclusions? Would you not adopt these neural mechanics too?
You are a product of your environment, and if your environment is insane, you will be too.
Autonomy and self direction in chaotic environments are important. Having a strong value system as a foundation for which to make decisions on is essential. It's essential that this value system is not compromised, because loss of identity, loss of self, loss of autonomy, loss of direction. Chaotic environments comprising of selves direct the individual self when values are lost. It's important to have a soul, and a heart. It's important to avoid judgement for differentness, or sameness. Everything is important when something has been lost.
There's only so much a singular self can handle from an environment that is chaotic. Insane is generally not a nice word. Social environment in relation to individual.
It could just as easily be the opposite - seeing insane people could make you less likely to go insane because you see how damaged they are and avoid it as much as you can. Ultimately it still boils down to you and your own brain, not anyone else.
If your only point of contact is people who speak spanish, you will never learn english. If your only point of contact is people that think that the world is flat, then most likely you will grow up believing the same. If everyone around you is insane, then it is exceedingly like you will be too.
Again, my belief is that you are a product of 1. Your environment and 2. Your genetic programming. And humans are social creatures, if the people that surround you are all in a certain way, you will probably tend that way too.
Your argument depends on a huge, untenable set of assumptions. Insanity is not comparable to languages or beliefs, they are severe dysfunctions, some or many of them genetically linked. Non-dysfunctional children raised in such an environment will certainly adopt odd behaviours thinking it's normal, but it's a huge stretch to say they will actually somehow adopt insanity.
What separates Insanity from normal healthy individuals is the ability to cope with normal society. If you believe you must wash your hands 20 times a day that's a problem even if you have nothing biologically wrong with you.
Except for people who do work that requires them to wash their hands that often (or more), and people who live in cultures where that is part of some daily religious ritual, and...
Actual hand-washing 20+ times for 2+ minutes each every day is extremely rare. Sanitizing for 20 seconds is a different story. Further, doctors don't do this on their days off which ends up being really important.
In the first case you would severely irritate the skin and end up with noticeable medical problems. Which IMO is a reasonable line for sanity in terms of day to day impact based on belief vs reality.
That said, sure there is something of an exception for religion.
> Insanity is not comparable to languages or beliefs, they are severe dysfunctions, some or many of them genetically linked.
I don't know man, I'm not exactly for the idea that insanity is a "social construct", but after reading this paper (http://hci.ucsd.edu/102b/readings/WeirdestPeople.pdf only the first two pages are the actual paper), I'd say that a lot of behavior in different cultures would be legimitately called "insane" in ours.
And besides that paper, there's also this meme flying around that "schizophrenics used to be shamans", although I don't know how believable that is.
Anyway, my point being, even insanity isn't exactly definable. Although I do agree stuff like a rabies infection, extremely severe aggressive and psychotic disorders would likely be considered "insane" in all cultures.
The fact that science as a discipline exists is a distinct counter example to this view. Without some degree of flexibility in humanities belief structure we as a species would never change at all, which is quite obviously not the case.
This is nothing new, and I have a hunch we're going to find more subtle mental changes associated with external infections (not just extreme dementia, paranoia, and seizures). Things that people currently associate with innate personality traits.
One example is the personality changes that toxoplasmosis can induce to humans, even when being latent. And I would guess that these will go undiagnosed for most people.
Children that receive methylphenidate suffer from less severe ADHD symptoms later in life, supposedly. If you look at it through this lens it becomes ethically problematic to deny them the medication, especially because it will not do this in adults (obviously it still treats the symptoms in adults, it just doesn't make them less bad over time).
I have an n=1 anecdata report on this topic, that some might be interested to know about.
I'd long experienced mild/moderate mental illness, including anxiety, depression, obsessiveness, sluggish cognition, possibly some ASD symptoms and possibly some personality disorder symptoms.
After my research led me to a possible link between inflammation/immunity/chronic infections and mental illness, I started attempting to influence this by adopting anti-inflammatory diets (paleo etc) and other approaches to supporting the immune system and fighting off chronic infection.
I found that at certain points, my physiological symptoms of inflammation/infection (most notably gum/tongue inflammation, digestive symptoms and tinnitus, all of which I'd had since early adolescence) would rapidly resolve, and this would be accompanied by a profound change in my mental health and sense of wellbeing: anxiety/depression would be replaced by confidence and optimism; lethargy and mental sluggishness would be replaced by physical energy, creativity, productivity and accomplishment; anger and resentment towards people in my life would be replaced by kindness and compassion; my chaotic, shambolic lifestyle would be replaced by orderliness.
However, these states of wellbeing would be accompanied by a nagging sense of fear and dread, that this version of myself wasn't the "real me", that it was unsafe for me to be in this state of health, and that I needed to go back to being my anxious, depressed, sluggish old self.
Sure enough, every time, within a few days I was back to where I was before.
It was a cycle that repeated several times over several years, during which I was torn between frustration and optimism, knowing that it was possible for me to get into a really good state of physical and mental health, but not knowing how to stay there long term.
The turning point came when I discovered and adopted a set of emotional healing practices that seek to identify and resolve deeply-held traumas and fears. I've been undertaking these practices consistently for about 6 years, and slowly but surely, my mental and physiological symptoms are steadily resolving, and all in a way that makes me feel very comfortable at every step of the process.
They're not all fully resolved yet; many of the symptoms I described above are still there to some degree, but with much less severity than when I was at my worst, and there's been a consistent enough improvement since I started this approach, that it feels like it's just a matter of time.
I'm well aware that it will take for me to achieve that state - for all symptoms of inflammation AND all symptoms of mental illness to be resolved - for my experience to be evidence of anything meaningful.
The hypothesis (which is not my own, it is from the scientist and writer whose ideas inspired me to try this approach) is that the immune system is heavily influenced by chronically held, unresolved emotions and unprocessed bad experiences.
Thus, if one is chronically stuck in a state of trauma, fear, or other negative emotion, the immune system will function in such a way that allows chronic infections to develop, leading to inflammation, which then leads to cascading effects on bodily systems including the nervous system, the hormonal system (particularly the HPA axis), the mitochondrial system and many others.
It may be because the body is devoting resources to being in a fight-or-flight state, and leaving immunity as a lower-order priority.
Or it may be that the mind/body deliberately lowers the immune system and allows these effects to happen, as a form of self-punishment (in the case of profound guilt) or to keep the self out of harm's way (a kind of trauma-induced hibernation).
I'd be unsurprised to find that either mechanism could apply depending on the preconditions, as could many others.
I raise it in the context of this article as I think it's relevant to the question of causality with res...
> anxiety/depression would be replaced by confidence and optimism; lethargy and mental sluggishness would be replaced by physical energy, creativity, productivity and accomplishment; anger resentment towards people in my life would be replaced by kindness and compassion; my chaotic, shambolic lifestyle would be replaced by orderliness.
> However, these states of wellbeing would be accompanied by a nagging sense of fear and dread, that this version of myself wasn't the "real me", that it was unsafe for me to be in this state of health, and that I needed to go back to being my anxious, depressed, sluggish old self.
I've had hypomanic episodes at times and have observed such episodes in friends, but they were still quite chaotic and a lot of the symptoms (resentment, aggression, anxiety) were still there, as were the physiological symptoms of inflammation.
The episodes I've described above were quite different, and notable for the simultaneous change both in my emotional state and my physiological state.
Thanks for sharing your experiences, and your success with self-experimentation. It's tragic that a similar protocol is not a first-line treatment for so-called "mental illness" (a term which should be entirely discarded [edit: the most observable symptoms are behavioral but the patient's condition is a conglomeration of contributing causes]).
Reading your comment, the notion of 'biological stress' came to mind. Wikipedia redirects to this page: https://en.wikipedia.org/wiki/Stress_(biology) (the subsections #Psychology and #Psychological_concepts are especially applicable to your comment).
The ambiguity in defining this phenomenon
was first recognized by Hans Selye
(1907–1982) in 1926. In 1951 a commentator
loosely summarized Selye's view of stress as
something that "...in addition to being
itself, was also the cause of itself, and
the result of itself".[30][31]
First to use the term in a biological
context, Selye continued to define stress as
"the non-specific response of the body to
any demand placed upon it". As of 2011
neuroscientists such as Bruce McEwen and
Jaap Koolhaas believe that stress, based on
years of empirical research, "should be
restricted to conditions where an
environmental demand exceeds the natural
regulatory capacity of an organism".
Dr. Gabor Maté quotes Selye in his book about addiction, In the Realm of Hungry Ghosts: "It may be said without hesitation that for man the most important stressors are emotional."
> nagging sense of fear and dread, that this version of myself wasn't the "real me"
You've been in an ill state for a long time, and when you come out of it you become more aware of your self and your environment, which makes you feel vulnerable. There are plenty of dangers and worries in the world that you weren't paying attention to that you aren't calibrated for. This is a typical J-curve situation. I suggest you do everything you can to stick through this sense of dread and you may very well see improvement.
My direct experience backs up your conclusions. My 8 yr old daughter went from sweet, confident and carefree to, overnight, crippled by worries about germs, wetting the bed and screaming about everything. From there, she rapidly descended into what I can only describe as being possessed… hallucinations, erratic and sometimes violent behavior, refusal to eat and so on. We did a spect scan which showed her basal ganglia lit up, a condition uncommon for her age, so the doctor said to suspect infection. Sure enough, her blood work showed that she had active strep and mycoplasma infections with no traditional symptoms (fever, etc. ).
We then embarked on a hellish journey of long term antibiotics, countless ivigs,plasmapheresis, multiple shots of rhituximab and endless battles with the insurance companies. Even after her blood work finally improved (and her psychosis diminished) she still experienced crippling OCD. Her care team at Stanford explained that her immune system had been attacking her brain and that if the condition is not caught quickly enough it is often necessary to re-train the brain, similar to the case of a stroke. We sent her to a residential facility in Wisconsin, Rogers Memorial, for 4 months and they did an incredible job bringing her back to about 90%. At this point, she is still on long term prophylactic antibiotics - the same protocol as for cases of rheumatic fever - and is doing well.
We met other families with kids at Rogers who did not improve even after 6 months of intensive treatment there. In one case, this was because they did not address the active infection in their child. Our anecdotal experience leads me to believe that it often takes a combination of intensive immunotherapy and brain rehabilitation to get the poor souls afflicted with this terrible disease back to baseline. There are now several research facilities popping up around the world (USA, Sweden, China) trying to improve upon the protocol used to treat this. Hopefully the process will continue to improve and these cases will be caught sooner and require less treatment than my daughter did.
Glad to hear your daughter is doing so much better, and it's fortunate that you're near Stanford. We're going through this right now. A little over a year ago, my then-6-year-old son caught a fever and quickly lost his mind. It felt a lot like demonic possession. He progressed from OCD to psychosis, eventually losing all of his language and academic abilities. Experiencing this as a parent has been horrifying.
To compound things, many medical providers either don't believe in or don't have experience in treating an autoimmune encephalopathy (brain inflammation) when there are no known markers for it (they've only identified around 18 antibodies for this condition, but there are likely thousands). There's also still, in the minds of many providers, an arbitrary distinction between so-called organic (i.e., coming from the organs) and psychiatric pathogenesis. (As an aside, the first comprehensive guidelines for treating PANS were published only last summer (https://home.liebertpub.com/news/revised-treatment-guideline...)
Anyway, my son has received steroids, antibiotics, IVIG, a tonsillectomy and, just this past week, plasmapheresis (to say nothing of all kinds of exotic supplements prescribed by our more fringe providers that, I think, pretty much have no effect). We've never been able to identify a specific infection at the root of this, although staph has been suspected at times. Post-plasmapheresis, he's already progressed to about 50% of his baseline. The next step will be either more plasmapheresis or rituximab.
Yes we feel fortunate to be near Stanford. During the plasmapheresis procedure our daughter was intubated for 5 full days, which was necessary due to her psychotic state. However, when she woke up she had to endure several days of dealing with fentanyl withdrawal (180+ heart rate, severe hallucinations, etc.). After getting through that, her psychosis was gone but her OCD lingered. In our case the PEX wasn't quite enough so they did several ritux shotx. FYI - the latest thought is that rituximab is most effective when combined with methyltrexate, but not sure if the data on that have been published yet.
Through it all, I've learned much more than I ever wanted to know about horrific medical conditions, the latest research on systemic inflammation, psych meds, navigating medical insurance claims and who my real friends are. As an app developer, I tried to do my little part by releasing an iOS app to help track it all, but that doesn't feel like enough. Now I have some degree of normal back in my life, I'm looking into other ways to reach out and support those going through what I did, so feel free to reach out if you have any suggestions.
That sounds awful. I'm so glad she came through. Thanks for the note about ritux. Honestly, the neurologist we're dealing with hasn't had a lot of cases like this, so any more info we can get is helpful. It's been interesting to be in a position where I've become much more familiar with the literature than almost every doctor I speak with.
Although we're still in the thick of it, I also want to find ways to help others and have a few ideas. An email address (anonymous on HN) is in my profile if you'd be up for connecting.
Hope your daughter gets better soon. Have you thought of writing a blog or journal? I think this info will help other parents in search of answers that aren't able to get their child in cutting-edge medical facilities.
Bruce Lipton. I’ve learned to be reticent about using his name, as determined skeptics inevitably link to the question-begging dismissals of his work and derail the discussion, but so far my experience seems to validate his ideas.
Others have mentioned Sarno before. I haven’t read his work but it seems relevant. I’ve had a lot of intense back tension/pain which is now finally subsiding, but my god it’s taken a lot of time and work.
From Wikipedia: In 2007, David Schechter (a medical doctor and former student and research assistant of Sarno) published a peer-reviewed[13] study of TMS treatment showing a 54% reduction in the average pain intensity scores for a cohort of 51 chronic back pain patients, whose average pain duration before the study was 9 years. In terms of statistical significance and success rate, the study outperformed similar studies of other psychological interventions for chronic back pain.
Hi. Celiac disease and non-celiac gluten sensitivity are linked to half a dozen mental illnesses, including ADHD, depression, anxiety, schizophrenia, OCD.
Sometimes, adopting a paleo or low carb diet can remove this allergen. Just something to think about. You don't have to have obvious symptoms of celiac disease or another allergy to ahve them.
The approach I've adopted is explicitly based on the notion that emotional changes lead to real, observable physiological changes, and the parallels with the "placebo effect" are openly acknowledged.
A notable conventional medicine devotee has tried to dismiss the validity of this by claiming that the placebo effect does not actually lead to real, objective, observable physiological changes [1]. I'm not dismissing the points or linked studies in that article, but they don't address the ailments and healing approaches I've used. It's not controversial that: reduction in chronic stress -> improvement in immunity -> reduction in infection and inflammation -> improved long-term physiological and mental health. I don't really care if you call it "placebo medicine" or not, the concept easily understood.
> cognitive/behavioral/talk therapy works
Not in my experience, and in what I've observed in others. Maybe there are psychologists and psychiatrists around who are able to offer treatment that works at the subconscious level where it's most needed, but I haven't found one or known of anyone else who has. In some cases, talk therapy can lead to negative outcomes, as it can have a re-traumatising effect rather than a resolving/healing one.
As a person who has an autoimmune illness (so I'm biased), I believe that immune system research is woefully underfunded. I lot of literature I've been reading recently is showing it's involvement in a whole host of "non-immune" diseases and many autoimmune illnesses (MS, Lupus, CFS, etc.) are shrouded in mystery.
I think that given the immune system's involvement in so many other diseases, basic research into its workings is really underfunded when compared to many other diseases that might derive benefit from more immune system research.
The reverse question is equally interesting - to what extent can we influence the activity of our immune system by controlling stress levels, practicing mindfulness, and the like? I think there is a lot still to be discovered about this.
Just to be clear, PANDAS is not just "controversial". Widely, it is not accepted as a specific condition. The sudden onset of childhood psychosis is a recognized syndrome but including any mention of autoimmune or strep in naming the syndrome is getting way ahead of ourselves.
54 comments
[ 346 ms ] story [ 2388 ms ] threadIf it was another mechanism in play then at the very least I would think that autoimmune treatment should be used as a backup plan in case typical OCD, ADHD, etc. drugs aren't working as shown through the article.
Of course I am not a medical researcher so this may have an obvious answer, but I always wanted to know how critics go beyond the "n=1" argument to disprove new solutions that seem to work perfectly.
Shouldn't these two powerful stimulants be medications of last resort?
I would be extremely wary of self-reported miracle cures for chronic diseases as well. 'Liberation treatment' for MS had many fantastic reports of patients throwing away their crutches and the like but of course turned out to be totally ineffective.
The problem IMO is that it takes a long time until correlations and later causation are found
That doesn't rule out the common environment of the womb of course.
Maternal nutrition seems far more likely given the prevalence being lowest in wealthier countries and higher in poorer countries on maps. Granted it may technically be epigenetic.
I wonder how common "summed" traits are where a few to some are good to have while too many or too few is a bad thing. I heard of one computer example which by no means biologically proves anything apparently too high a learning rate caused some neural networks to start making increasingly bizzare associations and caused the convergence rate to plummet instead of improving past a certain point as spurious correlations resulted in incoherence. The schizophrenia thought disorder resemblance was explicitly noted.
We lack the models to analyze and research how different diagnoses are related to each other.
Psychology today is a bit to obsessed with the surface structure of the mind, and the behavior that it causes. We need something like theoretical physics for the mind where we model more underlying functions not surface behavior. The mind might however be so complex that it is impossible. But on some level i think there is abstraction levels that can be modeled.
You are a product of your environment, and if your environment is insane, you will be too.
There's only so much a singular self can handle from an environment that is chaotic. Insane is generally not a nice word. Social environment in relation to individual.
If your only point of contact is people who speak spanish, you will never learn english. If your only point of contact is people that think that the world is flat, then most likely you will grow up believing the same. If everyone around you is insane, then it is exceedingly like you will be too.
Again, my belief is that you are a product of 1. Your environment and 2. Your genetic programming. And humans are social creatures, if the people that surround you are all in a certain way, you will probably tend that way too.
In the first case you would severely irritate the skin and end up with noticeable medical problems. Which IMO is a reasonable line for sanity in terms of day to day impact based on belief vs reality.
That said, sure there is something of an exception for religion.
I don't know man, I'm not exactly for the idea that insanity is a "social construct", but after reading this paper (http://hci.ucsd.edu/102b/readings/WeirdestPeople.pdf only the first two pages are the actual paper), I'd say that a lot of behavior in different cultures would be legimitately called "insane" in ours.
And besides that paper, there's also this meme flying around that "schizophrenics used to be shamans", although I don't know how believable that is.
Anyway, my point being, even insanity isn't exactly definable. Although I do agree stuff like a rabies infection, extremely severe aggressive and psychotic disorders would likely be considered "insane" in all cultures.
Are you really suggesting one's social environment has no effect on one's social behavior? Because that is obviously false.
One example is the personality changes that toxoplasmosis can induce to humans, even when being latent. And I would guess that these will go undiagnosed for most people.
https://www.scientificamerican.com/article/common-parasite-l...
Is this true? Treatments and medications, yes, but do any of the mainstream treatments or medications do anything to actually cure these conditions?
I'd long experienced mild/moderate mental illness, including anxiety, depression, obsessiveness, sluggish cognition, possibly some ASD symptoms and possibly some personality disorder symptoms.
After my research led me to a possible link between inflammation/immunity/chronic infections and mental illness, I started attempting to influence this by adopting anti-inflammatory diets (paleo etc) and other approaches to supporting the immune system and fighting off chronic infection.
I found that at certain points, my physiological symptoms of inflammation/infection (most notably gum/tongue inflammation, digestive symptoms and tinnitus, all of which I'd had since early adolescence) would rapidly resolve, and this would be accompanied by a profound change in my mental health and sense of wellbeing: anxiety/depression would be replaced by confidence and optimism; lethargy and mental sluggishness would be replaced by physical energy, creativity, productivity and accomplishment; anger and resentment towards people in my life would be replaced by kindness and compassion; my chaotic, shambolic lifestyle would be replaced by orderliness.
However, these states of wellbeing would be accompanied by a nagging sense of fear and dread, that this version of myself wasn't the "real me", that it was unsafe for me to be in this state of health, and that I needed to go back to being my anxious, depressed, sluggish old self.
Sure enough, every time, within a few days I was back to where I was before.
It was a cycle that repeated several times over several years, during which I was torn between frustration and optimism, knowing that it was possible for me to get into a really good state of physical and mental health, but not knowing how to stay there long term.
The turning point came when I discovered and adopted a set of emotional healing practices that seek to identify and resolve deeply-held traumas and fears. I've been undertaking these practices consistently for about 6 years, and slowly but surely, my mental and physiological symptoms are steadily resolving, and all in a way that makes me feel very comfortable at every step of the process.
They're not all fully resolved yet; many of the symptoms I described above are still there to some degree, but with much less severity than when I was at my worst, and there's been a consistent enough improvement since I started this approach, that it feels like it's just a matter of time.
I'm well aware that it will take for me to achieve that state - for all symptoms of inflammation AND all symptoms of mental illness to be resolved - for my experience to be evidence of anything meaningful.
The hypothesis (which is not my own, it is from the scientist and writer whose ideas inspired me to try this approach) is that the immune system is heavily influenced by chronically held, unresolved emotions and unprocessed bad experiences.
Thus, if one is chronically stuck in a state of trauma, fear, or other negative emotion, the immune system will function in such a way that allows chronic infections to develop, leading to inflammation, which then leads to cascading effects on bodily systems including the nervous system, the hormonal system (particularly the HPA axis), the mitochondrial system and many others.
It may be because the body is devoting resources to being in a fight-or-flight state, and leaving immunity as a lower-order priority.
Or it may be that the mind/body deliberately lowers the immune system and allows these effects to happen, as a form of self-punishment (in the case of profound guilt) or to keep the self out of harm's way (a kind of trauma-induced hibernation).
I'd be unsurprised to find that either mechanism could apply depending on the preconditions, as could many others.
I raise it in the context of this article as I think it's relevant to the question of causality with res...
> However, these states of wellbeing would be accompanied by a nagging sense of fear and dread, that this version of myself wasn't the "real me", that it was unsafe for me to be in this state of health, and that I needed to go back to being my anxious, depressed, sluggish old self.
Isn't this just the manic/depression cycle?
I've had hypomanic episodes at times and have observed such episodes in friends, but they were still quite chaotic and a lot of the symptoms (resentment, aggression, anxiety) were still there, as were the physiological symptoms of inflammation.
The episodes I've described above were quite different, and notable for the simultaneous change both in my emotional state and my physiological state.
Reading your comment, the notion of 'biological stress' came to mind. Wikipedia redirects to this page: https://en.wikipedia.org/wiki/Stress_(biology) (the subsections #Psychology and #Psychological_concepts are especially applicable to your comment).
Dr. Gabor Maté quotes Selye in his book about addiction, In the Realm of Hungry Ghosts: "It may be said without hesitation that for man the most important stressors are emotional."https://en.wikipedia.org/wiki/Gabor_Mat%C3%A9_(physician)
You've been in an ill state for a long time, and when you come out of it you become more aware of your self and your environment, which makes you feel vulnerable. There are plenty of dangers and worries in the world that you weren't paying attention to that you aren't calibrated for. This is a typical J-curve situation. I suggest you do everything you can to stick through this sense of dread and you may very well see improvement.
We then embarked on a hellish journey of long term antibiotics, countless ivigs,plasmapheresis, multiple shots of rhituximab and endless battles with the insurance companies. Even after her blood work finally improved (and her psychosis diminished) she still experienced crippling OCD. Her care team at Stanford explained that her immune system had been attacking her brain and that if the condition is not caught quickly enough it is often necessary to re-train the brain, similar to the case of a stroke. We sent her to a residential facility in Wisconsin, Rogers Memorial, for 4 months and they did an incredible job bringing her back to about 90%. At this point, she is still on long term prophylactic antibiotics - the same protocol as for cases of rheumatic fever - and is doing well.
We met other families with kids at Rogers who did not improve even after 6 months of intensive treatment there. In one case, this was because they did not address the active infection in their child. Our anecdotal experience leads me to believe that it often takes a combination of intensive immunotherapy and brain rehabilitation to get the poor souls afflicted with this terrible disease back to baseline. There are now several research facilities popping up around the world (USA, Sweden, China) trying to improve upon the protocol used to treat this. Hopefully the process will continue to improve and these cases will be caught sooner and require less treatment than my daughter did.
To compound things, many medical providers either don't believe in or don't have experience in treating an autoimmune encephalopathy (brain inflammation) when there are no known markers for it (they've only identified around 18 antibodies for this condition, but there are likely thousands). There's also still, in the minds of many providers, an arbitrary distinction between so-called organic (i.e., coming from the organs) and psychiatric pathogenesis. (As an aside, the first comprehensive guidelines for treating PANS were published only last summer (https://home.liebertpub.com/news/revised-treatment-guideline...)
Anyway, my son has received steroids, antibiotics, IVIG, a tonsillectomy and, just this past week, plasmapheresis (to say nothing of all kinds of exotic supplements prescribed by our more fringe providers that, I think, pretty much have no effect). We've never been able to identify a specific infection at the root of this, although staph has been suspected at times. Post-plasmapheresis, he's already progressed to about 50% of his baseline. The next step will be either more plasmapheresis or rituximab.
Through it all, I've learned much more than I ever wanted to know about horrific medical conditions, the latest research on systemic inflammation, psych meds, navigating medical insurance claims and who my real friends are. As an app developer, I tried to do my little part by releasing an iOS app to help track it all, but that doesn't feel like enough. Now I have some degree of normal back in my life, I'm looking into other ways to reach out and support those going through what I did, so feel free to reach out if you have any suggestions.
Although we're still in the thick of it, I also want to find ways to help others and have a few ideas. An email address (anonymous on HN) is in my profile if you'd be up for connecting.
Others have mentioned Sarno before. I haven’t read his work but it seems relevant. I’ve had a lot of intense back tension/pain which is now finally subsiding, but my god it’s taken a lot of time and work.
Sometimes, adopting a paleo or low carb diet can remove this allergen. Just something to think about. You don't have to have obvious symptoms of celiac disease or another allergy to ahve them.
But yes, gluten avoidance and paleo dieting have been very much part of my regimen, on and off for nearly 10 years.
What I've found is that it's been valuable but not sufficient.
A diet-only approach didn't bring about sustained healing, just as an emotion-only approach hasn't.
A combination of the two is what has ended up making the difference.
The approach I've adopted is explicitly based on the notion that emotional changes lead to real, observable physiological changes, and the parallels with the "placebo effect" are openly acknowledged.
A notable conventional medicine devotee has tried to dismiss the validity of this by claiming that the placebo effect does not actually lead to real, objective, observable physiological changes [1]. I'm not dismissing the points or linked studies in that article, but they don't address the ailments and healing approaches I've used. It's not controversial that: reduction in chronic stress -> improvement in immunity -> reduction in infection and inflammation -> improved long-term physiological and mental health. I don't really care if you call it "placebo medicine" or not, the concept easily understood.
> cognitive/behavioral/talk therapy works
Not in my experience, and in what I've observed in others. Maybe there are psychologists and psychiatrists around who are able to offer treatment that works at the subconscious level where it's most needed, but I haven't found one or known of anyone else who has. In some cases, talk therapy can lead to negative outcomes, as it can have a re-traumatising effect rather than a resolving/healing one.
[1] https://sciencebasedmedicine.org/is-harnessing-the-power-of-...
I think that given the immune system's involvement in so many other diseases, basic research into its workings is really underfunded when compared to many other diseases that might derive benefit from more immune system research.
https://sciencebasedmedicine.org/a-pandas-story/