7 ms·

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

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.

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.