10 ms·

Autoimmune disease can attack the brain, cause psychiatric symptoms

182 points by donohoe 3y ago

FollowingTheDao 3y ago
It’s so frustrating that the story is actually “new“. We’ve known about neuropsychiatric lupus for decades yet for people like me with disabling mood disorders to get to see a rheumatologist is nearly impossible. I have bipolar disorder or schizoaffective type and I am also in the initial stages of ankylosing spondylitis and consistent leukopenia, they think it’s a coincidence but I know it’s a mitochondrial disorder. (Complex I and III deficiency) We’ve gone nowhere in Treatment of mood disorders in over 70 years. My last episode of depression that landing in the hospital. What did they have to offer me? Electro shock treatment. No new tests, nothing.
- stef25 3y ago
  > they think it’s a coincidence but I know it’s a mitochondrial disorder Not saying you're wrong, just be very careful assuming you know more than your doctors > My last episode of depression that landing in the hospital. What did they have to offer me? Electro shock treatment. No new tests, nothing. Unfortunately there aren't that many tests for depression (I'm aware of none actually). Testing every fringe theory out there (which may well no longer be fringe in x time) is simply not feasible. Saying this as someone currently heavily medicated for depression.
  - FollowingTheDao 3y ago
    > Not saying you're wrong, just be very careful assuming you know more than your d This almost sounds like you are stereotyping me... I do know more than my doctors. For one, they never even know what receptors most of the medication I was taking affected. But also I have my own genetics and I spent the last 15 years studying genetics and neuro-biology. I often fake out researchers telling them I have a PhD and I talk with them with no problem. And I am currently offering assistance to a research study at Stanford who are looking into the possible genetic roots of a specific neurological disorder. So when I say I have a mitochondrial disorder that is causing multiple issues for me I know what I am talking about [1]. My mitochondrial haplotype is U [2]. I have rare gene changes in ND4 [3], ND4L, and MT-CYB [4} which are all linked to Mood Disorders and I have been treating them mostly successfully with high dose riboflavin [5] (this lowers glutamate [6] witch seems to be the mechanism that helps me most). > Testing every fringe theory out there (which may well no longer be fringe in x time) is simply not feasible. Saying this as someone currently heavily medicated for depression. My point is they are testing NOTHING. And these are not fringe theories. I am fighting for you and for my family who keeps wanting to end their life. By saying these are fringe theories you are playing into some stereotype (again). Take a look at pyridoxine for depression, or zinc or iron. These are not fringe theories, they are neglected theories because they would mean the end of treatment. I am not on zero meds but klonopin as needed. I have tried no less than 12 medications that "worked" but left me numb, over weight, and useless. Please do not give up and let these doctors tell you what the only truth is. I am now working with a family with TRMPSS6 mutations that leave them all iron deficient and oral iron was not helping. They all have severe depression and fatigue and anemia. The doctors gave up on them. Turns out all they needed was to take their iron with citric acid. [1] https://ibpf.org/wp-content/uploads/2020/02/Andreazza-Duong-Young-2018.pdf https://ibpf.org/wp-content/uploads/2020/02/Andreazza-Duong-... [2] https://www.sciencedirect.com/science/article/abs/pii/S0022395616304459 https://www.sciencedirect.com/science/article/abs/pii/S00223... [3] https://academic.oup.com/ijnp/article/8/4/515/652752 https://academic.oup.com/ijnp/article/8/4/515/652752 [4] https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1399-5618.2010.00882.x https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1399-5618.... [5] https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1111/j.1526-4610.2012.02233.x https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1... https://pdfs.semanticscholar.org/4948/b1d517ca7333fe0149f5bd5356dd50363cf3.pdf https://pdfs.semanticscholar.org/4948/b1d517ca7333fe0149f5bd... https://www.nature.com/articles/pr199327 https://www.nature.com/articles/pr199327 [6] https://journals.lww.com/neuroreport/Abstract/2004/10050/Group_B_vitamins_protect_murine_cerebellar_granule.20.aspx https://journals.lww.com/neuroreport/Abstract/2004/10050/Gro... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5517396/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5517396/
    - paradox242 3y ago
      Having watched my wife interact with the American medical system over the last 10 years for very similar symptoms, I have a much lower opinion of the amount of attention and care the average doctor is able to provide. There have been a few standout exceptions (her psychiatrist in particular) but overall there is little collaboration between the many specialists, and after billing our insurance for a battery of tests, there often little to no follow up.
      - haldujai 3y ago
        As a physician I also fully support the not hot-at-all take that we do a huge disservice to these patients and a very poor job with psychiatric and constitutional symptoms/illnesses in general with “good care” being the exception, as you unfortunately experienced.
        FollowingTheDao 3y ago
        Just wanted to thank you for coming out and saying that.
    - stef25 3y ago
      Was expecting you to protest but really it wasn't my intention to stereotype you. I have a Bsc Neuroscience myself but I guess not up to date enough. All I'd heard about Paxil / paroxetine was all negative yet for me it does make a little difference without any side effects at all. Not numb, not gaining weight, although I am curious about what you mean by "being useless"? I feel that way as well, but it could just be the depression. Modafinil helps. Admittedly I still feel like total shite most days and cry and have very dark thoughts more than I'd like to admit. Regarding insomnia I thought I knew all the treatments (and tried them, and they didn't work) until I was prescribed Trazodone. Did nothing for the depression but does give me 8-10 solid hours of sleep. Klonopin I get myself on the black market and it certainly can kick your ass but don't see how that helps against depression since it's mostly an anxiolytic? The only things that really help are illegal and I guess it just gets me more down in the long run, so round and round we go. Will def check out your theories & references, thanks for that.
  - laserlight 3y ago
    > Unfortunately there aren't that many tests for depression (I'm aware of none actually). Beck Depression Inventory [0] is one. [0] https://en.wikipedia.org/wiki/Beck_Depression_Inventory https://en.wikipedia.org/wiki/Beck_Depression_Inventory
- DANmode 3y ago
  > What did they have to offer me? Electro shock treatment. Which State did this take place in?
  - haldujai 3y ago
    Electroconvulsive therapy is an evidence-based intervention for certain types of depression. It should be “accessible” in every state although access to psychiatric care is often questionable unfortunately.
    - phkahler 3y ago
      >> Electroconvulsive therapy is an evidence-based intervention for certain types of depression. And evidence that it can cause memory problems and maybe more.
      - haldujai 3y ago
        Your point being..? Every treatment for anything has benefits and harms, there is evidence that the benefits of ECT outweighs the harms in select patients (like those refractory to conventional treatments) so it has been accepted medical practice for a while now. You certainly wouldn’t jump to put a patient on ECT. This is jogging my medical student memory but when I rotated on psychiatry the patients who underwent this procedure had quite severe and disabling symptoms, it seemed to help although I’m outside of my scope. It’s certainly accepted in the medical community though.
  - FollowingTheDao 3y ago
    North Carolina. At a leading university research center...
- taylorportman 3y ago
  I'm still reading this recent bulletin article about tDCS - turning that journalist into a sharpshooter and after seeing this: "She said those people have this overactive angry cortex guy just sitting there. When you apply the electric field, it shuts him right up and those people find that their depressive symptoms are alleviated." definitely want to look further into consumer tDCS devices. Presently I've been trying to fix myself by jogging more and drinking less. https://thebulletin.org/2023/05/qa-how-darpa-hacked-a-science-writers-brain-and-turned-her-into-a-sharpshooter/ https://thebulletin.org/2023/05/qa-how-darpa-hacked-a-scienc...
  - FollowingTheDao 3y ago
    The only reason I have nothing good to say about tDCS for depression is that they still do not know how it works and what they are targeting are if there are any repercussions. tDCS seems to boost gamma brain waves. That is pretty much where I live according to an the last time I was tested. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6491895/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6491895/
- pacaro 3y ago
  Getting to see a rheumatologist is way too hard. I have a more mundane autoimmune disease (psoriasis/psoriatic-arthritis) and excellent insurance, and it's still a struggle. And then it's a struggle to get authorization for the medication, even with good insurance
  - FollowingTheDao 3y ago
    I have nearly constant back pain, bone spurs and disc degeneration on my MRI, and a family history of ankylosing spondylitis which required surgery in two cases, and I still can’t see a rheumatologist for some reason. Probably because i am on Medicare.
  - John23832 3y ago
    Where I live, you basically can’t get without a referral. And primary care doctors are clueless about rheumatic symptoms, so they don’t refer. You’re basically forced to suffer until there is visible irreversible damage (crooked fingers, permanent hunch, eroded joints, eye damage) for them to say “oh shit, yea, you should see someone”. That’s not to say that the meds the rheumatologist will put you on will treat you any better.
londons_explore 3y ago
I'm going to take a wild guess that 90+% of things we describe as 'autoimmune' are in fact initially caused by some bacteria/virus/pollution we haven't yet identified. I'd like to see research done on mice to reduce the number of viruses and bacteria they are exposed to - for example by sterilizing all air, water, and food for many generations. Then see which ailments go away.
- haldujai 3y ago
  > I'm going to take a wild guess that 90+% of things we describe as 'autoimmune' are in fact initially caused by some bacteria/virus/pollution we haven't yet identified. As a wild guess probably a bit high but viruses like EBV are being increasingly suggested as causative of many autoimmune diseases. > I'd like to see research done on mice to reduce the number of viruses and bacteria they are exposed to - for example by sterilizing all air, water, and food for many generations. Then see which ailments go away. May not be the panacea you expect, on the other hand some people think too clean is the problem. https://en.m.wikipedia.org/wiki/Hygiene_hypothesis https://en.m.wikipedia.org/wiki/Hygiene_hypothesis
  - londons_explore 3y ago
    I think the hygiene hypothesis will turn out to be false, and data pointing in its direction will be the effects of cleaning products.
    - bckr 3y ago
      Yes or volatile organic compounds offgassing from manufactured goods
    - Llamamoe 3y ago
      The hygiene hypothesis makes sense wrt/ potential allergens, less so a "we should let our kids catch every virus under the sun because air quality standards sound annoying to care about"
  - Buxato 3y ago
meindnoch 3y ago
Ummm... how is this news? Just ask anyone with multiple sclerosis.
- Mezzie 3y ago
  Yeah, that was my first thought as an MS patient. Personal evidence aside, MSers depression and anxiety rates suggests some kind of relationship - as a population I believe we have some of the worst depression rates even controlling for the severity of the disease. We beat out cancer patients, for example.
  - johnisgood 3y ago
    It pisses me off that psychiatrists and neurologists have no clue about the fact that the disease itself (MS) may cause such symptoms in itself, plus, the fact that your quality of life is worse due to the illness. > It’s a disease that affects all the brain, including white and gray matters. The neurological lesions begin in early stages and affect all aspects of CNS functioning. MS symptoms include muscle weakness, visual acuity loss, sphincter incontinence, fatigue, anxiety, depression and cognitive deficits.[1] [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933139/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933139/ I just had a conversation with my psychiatrist and because the medications do not work for me, she thinks it is not organic. This one last time she also prescribed one of the worst antidepressants (it causes liver damage more so than the others, and taking any medications (such as the medication I take for MS) that harm the liver are a contraindication). I am not sure why it is not acknowledged, but the disease causes not only physical and neurological problems, but neuropsychiatric as well! I hope you have a different experience with doctors from around there.
- DANmode 3y ago
  Have you ever asked people without MS to describe it? If you don't know someone who has it, and weren't lucky enough to learn about it in school, chances are you don't really know what it is, or how it can present in a patient. Neuro is poorly understood in general by a large portion of the population.
pkoird 3y ago
It is remarkable how I keep on stumbling upon connections between Scizophrenia and Gut Bacterias and it is equally remarkable, the connection now being discovered between Gut Bacterias and Auto Immune disorders. And now when I find such anecdotes between possible connections of Auto Immune disorders and Schizophrenia, it just blows my mind to see how every thing is just connected to one another. This demonstrates just how much we still do not understand and on a more positive note, just how much we can in future.
- fnord77 3y ago
  and yet no viable, actionable treatment has come about from these connections despite them being around for a decade or more
- tomjakubowski 3y ago
  When I hear a person say their thoughts are being controlled by microscopic creatures living inside them, I won't write it off as a paranoid delusion. I'll hear them out.
- janeway 3y ago
  Agreed, however a massive fallacy in science is that the more people keep repeating “hypotheses”, the more likely you are to be persuaded by spurious results / false positives. With enough attention large scale statistical analysis should be able to define clear causal effects, but we often just see weak results about “maybes” and “might bes”.
- zoogeny 3y ago
  As a barely related tangential thought: I've wanted to write a short science-fiction story about an alien life-form slowly colonizing our planet by invading human gut micro-biome through our diet. Through this process they alter our food preferences to choose diets most conducive to their own flourishing and then eventually effect our minds. We become convinced that diet choices are for the benefit of our own health but in reality we are eating foods that really benefit the alien bacteria in our guts. The idea is very roughly based on the cat poop parasite (Toxoplasma gondii) that is theorized to alter human brain chemistry to change risk-taking behavior.
PretzelPirate 3y ago
There's a musician named Ren (@renmakesmusic) who was told for years that he had various psychiatric diseases and eventually it was discovered that he had an autoimmune disorder caused by Lyme disease. He writes songs about his experiences and how he thought his life was over. He mentioned in a podcast that he only got a proper diagnosis because he lied to a doctor about his symptoms to get specific meds, and those meds just happened to work. Because they worked, another doctor was able to put all the info together and diagnose Lyme.
- haldujai 3y ago
  Lyme disease can be “autoimmune” like in clinical manifestation but is more accurately described as a tick borne infectious disease treated primarily with antibiotics, as opposed to the viruses being discussed here which are more weakly linked and treated with immunosuppressants.
- PragmaticPulp 3y ago
  Be careful with anything related to “chronic Lyme”. While it is true that Lyme disease can trigger long-term symptoms, Lyme has also become a catch-all haven for pseudoscience practitioners and quackery. It has become so bad that most patients with unexplained chronic conditions who use internet health forums will eventually go through a phase where they think they might have Lyme disease. The “chronic Lyme” alternative medicine industry has evolved to cater to these desperate patients by offering convenient, albeit unprovable, answers to the question of what’s causing their symptoms. The chronic Lyme proponents claim that it can’t be tested for, won’t show up on normal tests, or can only be diagnosed through vague symptoms. As a result, anyone showing up with vague symptoms gets a diagnosis of chronic Lyme. Their proposed treatments usually involve extended rounds of expensive antibiotics which have no proof of working and have not shown any difference from placebo in clinical trials of supposed “chronic Lyme” patients. Sadly, some quick research on the musician you cited shows that he has been taken by one such alternative medicine practitioner and has been attempting to raise tens of thousands of dollars to pay this practitioner for antibiotic treatment. I’m sorry to say but I suspect this musician has been caught up in the chronic Lyme alternative medicine industry without much, or any, scientific basis for the expensive treatments he’s being peddled.
whatthesmack 3y ago
https://archive.is/vc5Bl https://archive.is/vc5Bl
tomohawk 3y ago
After many doctor fails, a family member resolved their symptoms through diet. Specifically, they follow the plant paradox diet. It's not just microbes that cause autoimmune issues, but also food you eat.
Zamicol 3y ago
This is common knowledge in the celiac community. Conditions like gluten ataxia are real and serious, which is understood to be distinct from "gluten fog". https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/ https://www.beyondceliac.org/celiac-disease/related-conditio...
refurb 3y ago
I have no idea if the theory has been disproven, but schizophrenia was thought to be autoimmune because the disease waxes and wanes, like multiple sclerosis and other immune diseases.
lincon127 3y ago
We've been seeing stuff like this with COVID-19. Long term, COVID-19 can increases susceptibility to autoimmune diseases, diseases which end up having dramatic impacts on brain health. I know some of the scientists that are having a field day publishing research measuring biomarkers that can predict brain health, and they are absolutely seeing an uptick after COVID-19, and have linked it to malfunctioning immune systems.
- xenonite 3y ago
  Could provide a link to which biomarkers there are increasing? Can they be correlated to the variants of virus and vaccine?
  - lincon127 3y ago
    Ok, I misunderstood the difference between an autoimmune disease and immune dysfunctions. COVID can cause malfunctions such as cytokine storms which have a downstream effect of increasing GFAP and NFL, two biomarkers which indicate brain health. If you search long COVID and NFL and GFAP, you should get several studies linking the after effects of acute COVID to increases in these biomarkers. I don't have specific examples though since I didn't read this, I got this from a researcher that's confirmed it in her own (currently unpublished) study and using it to make other observations, I can link you that though when it does get published! That being said I believe articles (like these https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320425/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320425/) will confirm as much, I'm just not parrotting any of the findings. As for variants, Omicron was not as bad I'm told, mostly because Omicron caused fewer people to get severely sick as it evolved to become less deadly. Thus there were fewer immune malfunctions. Vaccines should not have caused immune malfunctions as those malfunctions were induced by COVID making people severely sick, often to the point where they ended up in ICUs.
aksss 3y ago
The following video conference with Robert Lahita is one of the more substantive discussions on the understanding of systemic lupus erythematosus (SLE) that I've seen in a while. https://youtu.be/FYYfHWR7WwY https://youtu.be/FYYfHWR7WwY In his presentation (~36:20) he has a slide stating that *67% of those with SLE have psychological or psychiatric issues*, 8-20% seizures, 3-16% cranial neuropathy. Of course, "psychological or psychiatric" could be depression and anxiety, and I don't mean to minimize those issues at all, but cognitive dysfunction is a bear in the room for all SLE patients and probably far more serious if one is unlucky enough to have that symptom manifest (most do not, as I understand it). I will say that at disease onset and adjusting to having a disease, depression is common. It's life-changing, so to be expected. Ongoing, I think it's a constant battle as you're constantly reminded of limitations and pain is like an everyday companion that you learn to live with but sometimes the mental load can get overwhelming, triggering episodic depression. I know this from personal experience, but also my exposure to others with SLE and MS. As you go, it can be hard to know whether some mental and attitudinal issues are related to SLE and its side effects or just aging (e.g. increased anxiety, timidity, depression, memory loss, mental fog, fatigue). And speaking of mental load, blocking out chronic pain takes a lot of mental energy, which is a zero-sum game - it indirectly results in a decreased ability to focus, engage, etc. Regarding other comments here: 1) There are well over 200 identified "autoimmune disorders", and any amount of research that's compelled by having one of them will reveal how much and ironically how little the scientific community knows about causes, dynamics, and treatments for autoimmune disorders. In fact, the immune system itself is monstrously complex and it's amazing how mysterious it remains considering how much really is known about its mechanics. 2) Animal models for SLE (and I assume most autoimmune disorders of the same severity - not talking allergies and asthma here) are traditionally hard to create and have faith in, though this has been getting better. It makes sense that this has been challenging considering we don't know specific causes. 3) Pathogenesis - Environment (UV light, drugs, viruses, pollutants, etc.), hormones/epigenetics, genetics, stochastic factors (chance), comorbidities (e.g. hypertension), all seem to play a role, and none seem - on their own - to be good predictors of risk. It's thought that there's some "trigger" in the sense that all these factors reach some threshold that cause breakage in the system at a point in time and BAM! now you have Lupus or MS, for example. So it could be that you get infected with something and experience an extraordinary level of physical and mental stress at the same time, and it tips the scales. But on their own neither of these factors would be causal, and even together these wouldn't necessarily have the same impact on you at a different time in life or affect another the same way. Clearly there are missing links here.
onewheeltom 3y ago
Why did it take them 20 years to notice the autoimmune disorder?

182 points by donohoe 3y ago

It’s so frustrating that the story is actually “new“. We’ve known about neuropsychiatric lupus for decades yet for people like me with disabling mood disorders to get to see a rheumatologist is nearly impossible. I have bipolar disorder or schizoaffective type and I am also in the initial stages of ankylosing spondylitis and consistent leukopenia, they think it’s a coincidence but I know it’s a mitochondrial disorder. (Complex I and III deficiency) We’ve gone nowhere in Treatment of mood disorders in over 70 years. My last episode of depression that landing in the hospital. What did they have to offer me? Electro shock treatment. No new tests, nothing.

stef25 3y ago
> they think it’s a coincidence but I know it’s a mitochondrial disorder Not saying you're wrong, just be very careful assuming you know more than your doctors > My last episode of depression that landing in the hospital. What did they have to offer me? Electro shock treatment. No new tests, nothing. Unfortunately there aren't that many tests for depression (I'm aware of none actually). Testing every fringe theory out there (which may well no longer be fringe in x time) is simply not feasible. Saying this as someone currently heavily medicated for depression.
- FollowingTheDao 3y ago
  > Not saying you're wrong, just be very careful assuming you know more than your d This almost sounds like you are stereotyping me... I do know more than my doctors. For one, they never even know what receptors most of the medication I was taking affected. But also I have my own genetics and I spent the last 15 years studying genetics and neuro-biology. I often fake out researchers telling them I have a PhD and I talk with them with no problem. And I am currently offering assistance to a research study at Stanford who are looking into the possible genetic roots of a specific neurological disorder. So when I say I have a mitochondrial disorder that is causing multiple issues for me I know what I am talking about [1]. My mitochondrial haplotype is U [2]. I have rare gene changes in ND4 [3], ND4L, and MT-CYB [4} which are all linked to Mood Disorders and I have been treating them mostly successfully with high dose riboflavin [5] (this lowers glutamate [6] witch seems to be the mechanism that helps me most). > Testing every fringe theory out there (which may well no longer be fringe in x time) is simply not feasible. Saying this as someone currently heavily medicated for depression. My point is they are testing NOTHING. And these are not fringe theories. I am fighting for you and for my family who keeps wanting to end their life. By saying these are fringe theories you are playing into some stereotype (again). Take a look at pyridoxine for depression, or zinc or iron. These are not fringe theories, they are neglected theories because they would mean the end of treatment. I am not on zero meds but klonopin as needed. I have tried no less than 12 medications that "worked" but left me numb, over weight, and useless. Please do not give up and let these doctors tell you what the only truth is. I am now working with a family with TRMPSS6 mutations that leave them all iron deficient and oral iron was not helping. They all have severe depression and fatigue and anemia. The doctors gave up on them. Turns out all they needed was to take their iron with citric acid. [1] https://ibpf.org/wp-content/uploads/2020/02/Andreazza-Duong-Young-2018.pdf https://ibpf.org/wp-content/uploads/2020/02/Andreazza-Duong-... [2] https://www.sciencedirect.com/science/article/abs/pii/S0022395616304459 https://www.sciencedirect.com/science/article/abs/pii/S00223... [3] https://academic.oup.com/ijnp/article/8/4/515/652752 https://academic.oup.com/ijnp/article/8/4/515/652752 [4] https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1399-5618.2010.00882.x https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1399-5618.... [5] https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1111/j.1526-4610.2012.02233.x https://headachejournal.onlinelibrary.wiley.com/doi/abs/10.1... https://pdfs.semanticscholar.org/4948/b1d517ca7333fe0149f5bd5356dd50363cf3.pdf https://pdfs.semanticscholar.org/4948/b1d517ca7333fe0149f5bd... https://www.nature.com/articles/pr199327 https://www.nature.com/articles/pr199327 [6] https://journals.lww.com/neuroreport/Abstract/2004/10050/Group_B_vitamins_protect_murine_cerebellar_granule.20.aspx https://journals.lww.com/neuroreport/Abstract/2004/10050/Gro... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5517396/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5517396/
  - paradox242 3y ago
    Having watched my wife interact with the American medical system over the last 10 years for very similar symptoms, I have a much lower opinion of the amount of attention and care the average doctor is able to provide. There have been a few standout exceptions (her psychiatrist in particular) but overall there is little collaboration between the many specialists, and after billing our insurance for a battery of tests, there often little to no follow up.
    - haldujai 3y ago
      As a physician I also fully support the not hot-at-all take that we do a huge disservice to these patients and a very poor job with psychiatric and constitutional symptoms/illnesses in general with “good care” being the exception, as you unfortunately experienced.
      - FollowingTheDao 3y ago
        Just wanted to thank you for coming out and saying that.
  - stef25 3y ago
    Was expecting you to protest but really it wasn't my intention to stereotype you. I have a Bsc Neuroscience myself but I guess not up to date enough. All I'd heard about Paxil / paroxetine was all negative yet for me it does make a little difference without any side effects at all. Not numb, not gaining weight, although I am curious about what you mean by "being useless"? I feel that way as well, but it could just be the depression. Modafinil helps. Admittedly I still feel like total shite most days and cry and have very dark thoughts more than I'd like to admit. Regarding insomnia I thought I knew all the treatments (and tried them, and they didn't work) until I was prescribed Trazodone. Did nothing for the depression but does give me 8-10 solid hours of sleep. Klonopin I get myself on the black market and it certainly can kick your ass but don't see how that helps against depression since it's mostly an anxiolytic? The only things that really help are illegal and I guess it just gets me more down in the long run, so round and round we go. Will def check out your theories & references, thanks for that.
- laserlight 3y ago
  > Unfortunately there aren't that many tests for depression (I'm aware of none actually). Beck Depression Inventory [0] is one. [0] https://en.wikipedia.org/wiki/Beck_Depression_Inventory https://en.wikipedia.org/wiki/Beck_Depression_Inventory
DANmode 3y ago
> What did they have to offer me? Electro shock treatment. Which State did this take place in?
- haldujai 3y ago
  Electroconvulsive therapy is an evidence-based intervention for certain types of depression. It should be “accessible” in every state although access to psychiatric care is often questionable unfortunately.
  - phkahler 3y ago
    >> Electroconvulsive therapy is an evidence-based intervention for certain types of depression. And evidence that it can cause memory problems and maybe more.
    - haldujai 3y ago
      Your point being..? Every treatment for anything has benefits and harms, there is evidence that the benefits of ECT outweighs the harms in select patients (like those refractory to conventional treatments) so it has been accepted medical practice for a while now. You certainly wouldn’t jump to put a patient on ECT. This is jogging my medical student memory but when I rotated on psychiatry the patients who underwent this procedure had quite severe and disabling symptoms, it seemed to help although I’m outside of my scope. It’s certainly accepted in the medical community though.
- FollowingTheDao 3y ago
  North Carolina. At a leading university research center...
taylorportman 3y ago
I'm still reading this recent bulletin article about tDCS - turning that journalist into a sharpshooter and after seeing this: "She said those people have this overactive angry cortex guy just sitting there. When you apply the electric field, it shuts him right up and those people find that their depressive symptoms are alleviated." definitely want to look further into consumer tDCS devices. Presently I've been trying to fix myself by jogging more and drinking less. https://thebulletin.org/2023/05/qa-how-darpa-hacked-a-science-writers-brain-and-turned-her-into-a-sharpshooter/ https://thebulletin.org/2023/05/qa-how-darpa-hacked-a-scienc...
- FollowingTheDao 3y ago
  The only reason I have nothing good to say about tDCS for depression is that they still do not know how it works and what they are targeting are if there are any repercussions. tDCS seems to boost gamma brain waves. That is pretty much where I live according to an the last time I was tested. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6491895/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6491895/
pacaro 3y ago
Getting to see a rheumatologist is way too hard. I have a more mundane autoimmune disease (psoriasis/psoriatic-arthritis) and excellent insurance, and it's still a struggle. And then it's a struggle to get authorization for the medication, even with good insurance
- FollowingTheDao 3y ago
  I have nearly constant back pain, bone spurs and disc degeneration on my MRI, and a family history of ankylosing spondylitis which required surgery in two cases, and I still can’t see a rheumatologist for some reason. Probably because i am on Medicare.
- John23832 3y ago
  Where I live, you basically can’t get without a referral. And primary care doctors are clueless about rheumatic symptoms, so they don’t refer. You’re basically forced to suffer until there is visible irreversible damage (crooked fingers, permanent hunch, eroded joints, eye damage) for them to say “oh shit, yea, you should see someone”. That’s not to say that the meds the rheumatologist will put you on will treat you any better.

londons_explore 3y ago

I'm going to take a wild guess that 90+% of things we describe as 'autoimmune' are in fact initially caused by some bacteria/virus/pollution we haven't yet identified. I'd like to see research done on mice to reduce the number of viruses and bacteria they are exposed to - for example by sterilizing all air, water, and food for many generations. Then see which ailments go away.

haldujai 3y ago
> I'm going to take a wild guess that 90+% of things we describe as 'autoimmune' are in fact initially caused by some bacteria/virus/pollution we haven't yet identified. As a wild guess probably a bit high but viruses like EBV are being increasingly suggested as causative of many autoimmune diseases. > I'd like to see research done on mice to reduce the number of viruses and bacteria they are exposed to - for example by sterilizing all air, water, and food for many generations. Then see which ailments go away. May not be the panacea you expect, on the other hand some people think too clean is the problem. https://en.m.wikipedia.org/wiki/Hygiene_hypothesis https://en.m.wikipedia.org/wiki/Hygiene_hypothesis
- londons_explore 3y ago
  I think the hygiene hypothesis will turn out to be false, and data pointing in its direction will be the effects of cleaning products.
  - bckr 3y ago
    Yes or volatile organic compounds offgassing from manufactured goods
  - Llamamoe 3y ago
    The hygiene hypothesis makes sense wrt/ potential allergens, less so a "we should let our kids catch every virus under the sun because air quality standards sound annoying to care about"
- Buxato 3y ago

meindnoch 3y ago

Ummm... how is this news? Just ask anyone with multiple sclerosis.

Mezzie 3y ago
Yeah, that was my first thought as an MS patient. Personal evidence aside, MSers depression and anxiety rates suggests some kind of relationship - as a population I believe we have some of the worst depression rates even controlling for the severity of the disease. We beat out cancer patients, for example.
- johnisgood 3y ago
  It pisses me off that psychiatrists and neurologists have no clue about the fact that the disease itself (MS) may cause such symptoms in itself, plus, the fact that your quality of life is worse due to the illness. > It’s a disease that affects all the brain, including white and gray matters. The neurological lesions begin in early stages and affect all aspects of CNS functioning. MS symptoms include muscle weakness, visual acuity loss, sphincter incontinence, fatigue, anxiety, depression and cognitive deficits.[1] [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933139/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933139/ I just had a conversation with my psychiatrist and because the medications do not work for me, she thinks it is not organic. This one last time she also prescribed one of the worst antidepressants (it causes liver damage more so than the others, and taking any medications (such as the medication I take for MS) that harm the liver are a contraindication). I am not sure why it is not acknowledged, but the disease causes not only physical and neurological problems, but neuropsychiatric as well! I hope you have a different experience with doctors from around there.
DANmode 3y ago
Have you ever asked people without MS to describe it? If you don't know someone who has it, and weren't lucky enough to learn about it in school, chances are you don't really know what it is, or how it can present in a patient. Neuro is poorly understood in general by a large portion of the population.

pkoird 3y ago

It is remarkable how I keep on stumbling upon connections between Scizophrenia and Gut Bacterias and it is equally remarkable, the connection now being discovered between Gut Bacterias and Auto Immune disorders. And now when I find such anecdotes between possible connections of Auto Immune disorders and Schizophrenia, it just blows my mind to see how every thing is just connected to one another. This demonstrates just how much we still do not understand and on a more positive note, just how much we can in future.

fnord77 3y ago
and yet no viable, actionable treatment has come about from these connections despite them being around for a decade or more
tomjakubowski 3y ago
When I hear a person say their thoughts are being controlled by microscopic creatures living inside them, I won't write it off as a paranoid delusion. I'll hear them out.
janeway 3y ago
Agreed, however a massive fallacy in science is that the more people keep repeating “hypotheses”, the more likely you are to be persuaded by spurious results / false positives. With enough attention large scale statistical analysis should be able to define clear causal effects, but we often just see weak results about “maybes” and “might bes”.
zoogeny 3y ago
As a barely related tangential thought: I've wanted to write a short science-fiction story about an alien life-form slowly colonizing our planet by invading human gut micro-biome through our diet. Through this process they alter our food preferences to choose diets most conducive to their own flourishing and then eventually effect our minds. We become convinced that diet choices are for the benefit of our own health but in reality we are eating foods that really benefit the alien bacteria in our guts. The idea is very roughly based on the cat poop parasite (Toxoplasma gondii) that is theorized to alter human brain chemistry to change risk-taking behavior.

PretzelPirate 3y ago

There's a musician named Ren (@renmakesmusic) who was told for years that he had various psychiatric diseases and eventually it was discovered that he had an autoimmune disorder caused by Lyme disease. He writes songs about his experiences and how he thought his life was over. He mentioned in a podcast that he only got a proper diagnosis because he lied to a doctor about his symptoms to get specific meds, and those meds just happened to work. Because they worked, another doctor was able to put all the info together and diagnose Lyme.

haldujai 3y ago
Lyme disease can be “autoimmune” like in clinical manifestation but is more accurately described as a tick borne infectious disease treated primarily with antibiotics, as opposed to the viruses being discussed here which are more weakly linked and treated with immunosuppressants.
PragmaticPulp 3y ago
Be careful with anything related to “chronic Lyme”. While it is true that Lyme disease can trigger long-term symptoms, Lyme has also become a catch-all haven for pseudoscience practitioners and quackery. It has become so bad that most patients with unexplained chronic conditions who use internet health forums will eventually go through a phase where they think they might have Lyme disease. The “chronic Lyme” alternative medicine industry has evolved to cater to these desperate patients by offering convenient, albeit unprovable, answers to the question of what’s causing their symptoms. The chronic Lyme proponents claim that it can’t be tested for, won’t show up on normal tests, or can only be diagnosed through vague symptoms. As a result, anyone showing up with vague symptoms gets a diagnosis of chronic Lyme. Their proposed treatments usually involve extended rounds of expensive antibiotics which have no proof of working and have not shown any difference from placebo in clinical trials of supposed “chronic Lyme” patients. Sadly, some quick research on the musician you cited shows that he has been taken by one such alternative medicine practitioner and has been attempting to raise tens of thousands of dollars to pay this practitioner for antibiotic treatment. I’m sorry to say but I suspect this musician has been caught up in the chronic Lyme alternative medicine industry without much, or any, scientific basis for the expensive treatments he’s being peddled.

whatthesmack 3y ago

https://archive.is/vc5Bl https://archive.is/vc5Bl

tomohawk 3y ago

After many doctor fails, a family member resolved their symptoms through diet. Specifically, they follow the plant paradox diet. It's not just microbes that cause autoimmune issues, but also food you eat.

Zamicol 3y ago

This is common knowledge in the celiac community. Conditions like gluten ataxia are real and serious, which is understood to be distinct from "gluten fog". https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/ https://www.beyondceliac.org/celiac-disease/related-conditio...

refurb 3y ago

I have no idea if the theory has been disproven, but schizophrenia was thought to be autoimmune because the disease waxes and wanes, like multiple sclerosis and other immune diseases.

lincon127 3y ago

We've been seeing stuff like this with COVID-19. Long term, COVID-19 can increases susceptibility to autoimmune diseases, diseases which end up having dramatic impacts on brain health. I know some of the scientists that are having a field day publishing research measuring biomarkers that can predict brain health, and they are absolutely seeing an uptick after COVID-19, and have linked it to malfunctioning immune systems.

xenonite 3y ago
Could provide a link to which biomarkers there are increasing? Can they be correlated to the variants of virus and vaccine?
- lincon127 3y ago
  Ok, I misunderstood the difference between an autoimmune disease and immune dysfunctions. COVID can cause malfunctions such as cytokine storms which have a downstream effect of increasing GFAP and NFL, two biomarkers which indicate brain health. If you search long COVID and NFL and GFAP, you should get several studies linking the after effects of acute COVID to increases in these biomarkers. I don't have specific examples though since I didn't read this, I got this from a researcher that's confirmed it in her own (currently unpublished) study and using it to make other observations, I can link you that though when it does get published! That being said I believe articles (like these https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320425/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8320425/) will confirm as much, I'm just not parrotting any of the findings. As for variants, Omicron was not as bad I'm told, mostly because Omicron caused fewer people to get severely sick as it evolved to become less deadly. Thus there were fewer immune malfunctions. Vaccines should not have caused immune malfunctions as those malfunctions were induced by COVID making people severely sick, often to the point where they ended up in ICUs.

aksss 3y ago

The following video conference with Robert Lahita is one of the more substantive discussions on the understanding of systemic lupus erythematosus (SLE) that I've seen in a while. https://youtu.be/FYYfHWR7WwY https://youtu.be/FYYfHWR7WwY In his presentation (~36:20) he has a slide stating that *67% of those with SLE have psychological or psychiatric issues*, 8-20% seizures, 3-16% cranial neuropathy. Of course, "psychological or psychiatric" could be depression and anxiety, and I don't mean to minimize those issues at all, but cognitive dysfunction is a bear in the room for all SLE patients and probably far more serious if one is unlucky enough to have that symptom manifest (most do not, as I understand it). I will say that at disease onset and adjusting to having a disease, depression is common. It's life-changing, so to be expected. Ongoing, I think it's a constant battle as you're constantly reminded of limitations and pain is like an everyday companion that you learn to live with but sometimes the mental load can get overwhelming, triggering episodic depression. I know this from personal experience, but also my exposure to others with SLE and MS. As you go, it can be hard to know whether some mental and attitudinal issues are related to SLE and its side effects or just aging (e.g. increased anxiety, timidity, depression, memory loss, mental fog, fatigue). And speaking of mental load, blocking out chronic pain takes a lot of mental energy, which is a zero-sum game - it indirectly results in a decreased ability to focus, engage, etc. Regarding other comments here: 1) There are well over 200 identified "autoimmune disorders", and any amount of research that's compelled by having one of them will reveal how much and ironically how little the scientific community knows about causes, dynamics, and treatments for autoimmune disorders. In fact, the immune system itself is monstrously complex and it's amazing how mysterious it remains considering how much really is known about its mechanics. 2) Animal models for SLE (and I assume most autoimmune disorders of the same severity - not talking allergies and asthma here) are traditionally hard to create and have faith in, though this has been getting better. It makes sense that this has been challenging considering we don't know specific causes. 3) Pathogenesis - Environment (UV light, drugs, viruses, pollutants, etc.), hormones/epigenetics, genetics, stochastic factors (chance), comorbidities (e.g. hypertension), all seem to play a role, and none seem - on their own - to be good predictors of risk. It's thought that there's some "trigger" in the sense that all these factors reach some threshold that cause breakage in the system at a point in time and BAM! now you have Lupus or MS, for example. So it could be that you get infected with something and experience an extraordinary level of physical and mental stress at the same time, and it tips the scales. But on their own neither of these factors would be causal, and even together these wouldn't necessarily have the same impact on you at a different time in life or affect another the same way. Clearly there are missing links here.

onewheeltom 3y ago

Why did it take them 20 years to notice the autoimmune disorder?