PANDAS revives the debate about the immune system and mental illness (2015)
nautil.us
nautil.us
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 respect to infections and mental health.
Given what I've experienced, it's no surprise to me to read the story of Isak McCune at the beginning of the article, in which the contraction of an infection seemed to be a trigger for serious mental illness.
But one still needs to explain why only some people who contract this infection end up with the mental illness (in Isak's case, there's no mention that the brother who'd had four bouts of strep infections had any comparable mental illness symptoms).
Equally, for many people who end up in a state of mental illness, it comes after a severe trauma or a sequence of traumatic events (one can find many studies linking PTSD with infections and inflammation). There's no need to postulate an infection as a primary cause, as we can observe the events that led the person into their state of mental illness
It makes sense to me, in theory and based on my own experience-to-date, that it is a combination of genetic preconditions, experiences, emotional states, infection exposures, immune/inflammatory responses and others, that can all conspire to result in a state of mental illness.
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.
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".
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.
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.
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.
> 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.
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-...
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.
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.
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...
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.
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.
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.
Are you really suggesting one's social environment has no effect on one's social behavior? Because that is obviously false.
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.
Is this true? Treatments and medications, yes, but do any of the mainstream treatments or medications do anything to actually cure these conditions?
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.
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.