When it's not really a mental illness.....

[ktgrok]

In researching all the stuff going on with DS6, I'm blown away at how many things can cause psychiatric symptoms. Especially wondering how many people are diagnosed with schizophrenia, bipolar, anxiety, depression, etc who actually have autoimmune encephalitis, celiac, lyme disease, thyroid disease, lupus, etc! A friend told me yesterday when I was musing on this that she was diagnosed bipolar herself for a full year before finding out she actually had celiac disease! Gluten free fixed the issue. Others I'm reading about have various other autoimmune diseases that are very treatable, but end up misdiagnosed or even institutionalized. It's maddening! 

[Ottakee]

It is maddening.....and a commentary on our mental health system.  We were pleased with an excellent pdoc for my kids that ruled out all sorts of other medical issues first....seizures (ok, that was positive), heart issues, thyroid (one needed meds), comprehensive chem blood work (one needed iron supplements and all Vit D), etc and on and on.

Doctors look at physical or mental but most aren't trained to look at both.  Our neurologist said that some autism, mental health issues, etc are due to mitochondrial myopathies.  Those get treated a bit differently.  Then there are the ADHD kids that really have sleep issues and removing tonsils and adenoids helps them, etc.

[Um_2_4]

I'll be honest, with myself and a couple other people I know, i get frustrated because I wonder if there is some underlying "big" cause for other diagnoses.

Like myself. I know I have hypercholestemia (since my 20s), insulin resistance (since I was 5, diagnosed in a hospital), PCOS, anxiety, etc and a slew of other issues. But anytime I ask about diving deeper into why or if something else is going on... I get the "lose weight" answer,that is all. Look, I was skinny at 5yo (have pictures to prove it), so weight had nothing to do with my low blood sugars and high insulin levels...those are what led to the weight gain...DUH!

Another person I know has weird digestive issues (actually runs in the family, 1 sibling had surgery for polyps in their 40s), severe anxiety, other mental issues I believe, maybe OCD(which also runs in the family), but about people, not things, and I often wondered if it is all connected.

[Mergath]

I don't know if it's as many people as it seems like, tbh. I know people who have mental illnesses, tried a fad diet, swore up and down they were cured!!! and six months later were back on meds. 

I have no doubt that there are quite a few diseases that give the appearance of mental illness, but I think there are also a lot of people out there who are mentally ill and are so desperate to be healed they're able to convince themselves that something (gluten-free diet, new fitness regimen, supplements, essential oils, whatever) is working. I've done it myself with my OCD. Spoiler: It didn't work for very long, lol.

If you're reading medical journals to get info on this, that's one thing. But I'd be hesitant to start thinking that all these people with bipolar disorder or anxiety disorders or schizophrenia actually have celiac or allergies to food dyes just because there are a lot of bloggers out there claiming they gave up dairy and it cured their depression. I wish it was that simple, but I really don't think it is.

Eta: And yes, I am possibly oversensitive about this because of all the damn MLMs telling me I could be healed if I just bought their diet shakes or EOs. Lol

  

Edited January 5, 2019 by Mergath

[Ottakee]

Mergath....you just need Plexus.  Really, truly, you just need Plexus....or the MLM of the month.   I get it.  I get frustrated too.

My post above I mention a lot of other health issues we discussed, ruled out, treated, etc...but truth be told, I still have kids dealing with mental illness and I hand out meds twice a day, every day, for the rest if their lives.  The mental health stuff likely has it's base in a mitochondrial myopathy but they still need meds.  Omega 3s and other vitamins help...but they still need meds.  Treating thyroid helped....but they still need meds.

On the flip side, my nephew when younger suddenly became OCD to the extreme.  For him it was PANDAS and the appropriate antibiotic and it went away and never came back.

What we need is better and more comprehensive mental health care..

[Mergath]

5 minutes ago, Ottakee said:

Mergath....you just need Plexus.  Really, truly, you just need Plexus....or the MLM of the month.   I get it.  I get frustrated too.

My post above I mention a lot of other health issues we discussed, ruled out, treated, etc...but truth be told, I still have kids dealing with mental illness and I hand out meds twice a day, every day, for the rest if their lives.  The mental health stuff likely has it's base in a mitochondrial myopathy but they still need meds.  Omega 3s and other vitamins help...but they still need meds.  Treating thyroid helped....but they still need meds.

On the flip side, my nephew when younger suddenly became OCD to the extreme.  For him it was PANDAS and the appropriate antibiotic and it went away and never came back.

What we need is better and more comprehensive mental health care..

 

And I completely understand the other side, too. My dd has a rare genetic disorder that causes autism in one out of three kids. I know there are a lot of underlying conditions in the world that go undiagnosed in a lot of people. That is absolutely something that needs to change. 

I suppose I think we need to tread carefully when we talk about people with mental illness not REALLY being mentally ill, and needing a dietary change or a round of antibiotics to be all better. The world barely takes mental illness seriously as it is, and there's already such a push to make us think that we aren't crazy, we just need a walk in the woods! You don't need a pill, you need whole foods! 

No, I really, really do need my meds, lol.

[PeterPan]

Unfortunately, I have to fall in with the people who are saying good luck on that discovery completely solving it. People want the problems of themselves or their loved ones to be curable and better yet to GO AWAY. They want hope. So whether it's the baptists saying their kid's ADHD was actually APD or someone saying their mental health diagnosis was because they had xyz, well keep going with that. It was way more complicated than that. What led to the propensity to that problem in the first place? Probably the very thing that is making them prone to the mental health symptoms.

Now there is this whole idea of nutrigenomics and using genetics to inform us on things affecting mental health. I really buy into that, because it's the closest thing I've seen that actually makes ANY sense. That to me is concrete reality, like you have these gene screwing up production of such and such which results in such and such imbalance/deficiency leading to such and such symptoms. That I buy. There's a lot of talk right now about methyl levels and bipolar and using niacin and other things that can modulate methyl levels to control bipolar. Does that mean taking niacin makes a person "safe" and resolves the issue? Good luck with that. We're doing that, and it's pretty tenuous. 

When the problems are long-standing and really serious, even practitioners who are pretty alternative (like a particular nutritionist I used, etc.) are going to back off. She always said once the person has been on psychiatric meds, all bets are off because the brain has been affected. Like sometimes reality just sucks. I've got my ds held together with a patchwork of things that are actually addressing what is wrong. It works, but it's SO tenuous. The day he becomes non-compliant, he'll have to go on p-doc medications. I find the issue is it's just HARD to sort through this stuff. It's not easy answers. It's complicated.

But yeah, if you want to start somewhere, I always like genetics. 23andme and then run that data through promothease. Pick your symptom and start googling for SNPs to look for. There might be something in there to help you.

[Tap]

I have a daughter with significant mental health issues.

I have another daughter with a serious health issue, that is often misdiagnosed as a mental health issue. Had we not stumbled across the only specialist in our area in her health issue, it would have likely been seen as mental health related instead. 

I live with a foot in both worlds. 

I wish it wasn't so hard to get health issues diagnosed.  I wish mental health care wasn't an educated guess so much of the time.

In the 5 years of dd20's diagnosis, we saw 30 specialists!   30!  Often multiple doctors in similar socialites, but each with a different focus. ie she has 2 neurologists. One for headaches, one for her chronic pain. Some of her doctors/providers are for treatment of her symptoms ie chiro, massage, and PT. Some weren't to diagnose her current issue, but to eliminate other illnesses ie rheumatology, immunology, nephrology, oncology.   She has had so much imaging there is very little of her body that isn't on some form of film. We live in a largish city with teaching hospitals. If we lived in a rural area, it would have been nearly impossible to have timely access to so many doctors, and facilities.  Lucily my insurance has a $5,000 out of pocket max each year, and I know we will hit it every year, so I don't hesitate when a new doctor has a new idea and wants an expensive test, just to rule something out.  I know that most people don't have the luxuries that we have had in getting her diagnosed.  Hardly any of her doctors had ever heard of her POTS diagnosis, and only one had any useful knowledge of it. 

DD12 has had the same advantages, but her issues are mental health related. She has benefited from 500 BT or OT sessions, 2 neuropsych evals, and goes to a therapeutic day school. I can safely assume that most kids in her situation aren't as "lucky." If any one remembers "Denisemomof4" her daughter struggles and my daughter's are very similar but she lived in a smaller community and had to homeschooled her daughter.  (((((hugs to them both, If anyone knows them IRL)))))

To the OP...I would absolutely LOVE someone to help me figure out a way to help dd's mental health struggles through healing/treating her body. I really, honestly hope that as genetic testing becomes more common, that we can move the direction of truely diagnosing mental health issues with Evidence based science. I hate the fact that so much of mental health care is based on "you have xyz symptoms, take this pill and if it helps, then it must be xyz disorder."  Mental health isn't like blood pressure that you can measure. Until the day we can (most likely genetic based) I don't think we are going to move beyond that. That leads to a lot of misdiagnosed people. 

Edited January 5, 2019 by Tap

[gardenmom5]

5 hours ago, Ktgrok said:

In researching all the stuff going on with DS6, I'm blown away at how many things can cause psychiatric symptoms. Especially wondering how many people are diagnosed with schizophrenia, bipolar, anxiety, depression, etc who actually have autoimmune encephalitis, celiac, lyme disease, thyroid disease, lupus, etc! A friend told me yesterday when I was musing on this that she was diagnosed bipolar herself for a full year before finding out she actually had celiac disease! Gluten free fixed the issue. Others I'm reading about have various other autoimmune diseases that are very treatable, but end up misdiagnosed or even institutionalized. It's maddening! 

all of the bolded have also been linked to symptomatic mthf 1298 mutation.  I'm  sure my mom was symptomatic, as she also had the vascular (tia's/strokes), and joint issues related to it.  and my dad really struggled with depression.  (they both had at least one copy - 'cause I have two.) 

easily treatable, but barely known in western meds.   even my DO - who knew about it, didn't have a clue what she was doing.  she put me on 15mg right out of the gate.  she didn't care I could only tolerate 2mg. (one more check mark against her before I fired her.)

for those with a mthf problem - one of the WORST things we can ingest - is folic acid.  (it's fake, and blocks absorption of real folate.).  and the number of foods that have folic acid in them . . .

[Just Kate]

My best friend was diagnosed as bipolar. She had all of the symptoms and there was no question that she had it. Probably two years or so after being diagnosed, she became ill (she had had a hysterectomy and just wasn’t healing well). She had a bad cough and they suspected pneumonia, so she had a chest X-ray. The X-ray showed some spots on her lungs which led to a ct scan. In a weird round about way, they determined that she had adrenal cancer, which had already spread to her lungs and her bones. It was determined that she did not have bipolar disorder. She was 36 when all of this happened. She passed away shortly there after. It was a very sad situation. 

[ktgrok]

10 hours ago, Mergath said:

I don't know if it's as many people as it seems like, tbh. I know people who have mental illnesses, tried a fad diet, swore up and down they were cured!!! and six months later were back on meds. 

I have no doubt that there are quite a few diseases that give the appearance of mental illness, but I think there are also a lot of people out there who are mentally ill and are so desperate to be healed they're able to convince themselves that something (gluten-free diet, new fitness regimen, supplements, essential oils, whatever) is working. I've done it myself with my OCD. Spoiler: It didn't work for very long, lol.

If you're reading medical journals to get info on this, that's one thing. But I'd be hesitant to start thinking that all these people with bipolar disorder or anxiety disorders or schizophrenia actually have celiac or allergies to food dyes just because there are a lot of bloggers out their claiming they gave up dairy and it cured their depression. I wish it was that simple, but I really don't think it is.

Eta: And yes, I am possibly oversensitive about this because of all the damn MLMs telling me I could be healed if I just bought their diet shakes or EOs. Lol

  

Oh, I'm not taking about personal blogs where they cured their whatever with organic food or whatever. I'm talking about medical journals with studies, or at minimum case reports, detailing people diagnosed with say, schizophrenia only to later be found to have autoimmune encephalitis which was treated with immune mediating medication and they were (after months of treatment) cured. Or people with supposed OCD or Bipolar who actually had  (confirmed with biopsy and bloodwork) celiac - the antibodies were attacking not just the gut but also the brain. Or kids even kids with ADHD who turn out to actually have absence seizures, and get better on anti-seizure medication. Or on a smaller scale, things like the boardie here who has a daughter who was  diagnosed with anxiety for YEARS by three doctors before finding out she actually was severely anemic, and the anemia was what was causing episodes of rapid heartbeat and shortness of breath - not anxiety. Even my husband, who was struggling with depression and when I pushed for testing turned out to have rock bottom Vitamin D levels - like, going to get rickets kind of low - a month of vitamin D supplements and he was a different person.

So yeah, not talking about fads, but about doctors taking the time to rule out physical illness or injury before jumping to a mental illness diagnosis. I mean, how often does a doctor, when presented with a person describing depression or anxiety, actually test for lupus, celiac, lyme, etc? And yet the medical literature shows those things absolutely can cause those symptoms, and are treatable. 

With my own son, the doctor tried to shrug and say he might have autism, but I KNOW my kid (and autism). I know that he didn't suddenly develop it at age 6, along with OCD, etc. He wasn't gaining weight, he has dark circles under his eyes, he LOOKS sick to me. Not to mention that ibuprofen made his anxiety/OCD/hyper behavior go away. So I pushed. I'm still pushing. So far we know he is anemic, has low vitamin D, and is positive for celiac antibodies. Still waiting on the EEG results, and will have to rerun the Lyme test as it was negative but the specific band that was positive on IGG and IGM could indicate early infection so the lab report advises retesting (I doubt it is lyme but will retest as advised). We wouldn't have found those things out if I hadn't pushed, we'd just have a referral to a psych.

 

[gardenmom5]

my friend's daughter was diagnosed mentally ill.  not sure of the details.  her psychiatrist should have been sued.   she had a massive brain tumor pressing on other parts of her brain, and it also caused massive headaches.   she wouldn't have last much longer if it hadn't been discovered.

[DesertBlossom]

I have been thinking about this recently. My sister has an 18 year old foreign exchange student living with them and in the last 2 weeks he appears to have had a massive mental breakdown. It started with some OCD behaviors and then worry over my sister sending him to another family. For example asking every family members multiple times if they were sending him anyway. He started giving frequent speeches about how much he loves them and doesn't want to leave. But he's also worried they are going to kill him. 🤔 Symptoms got so weird the director of his program took him for a psych exam and they wanted to admit him because he was hearing voices. But being 18 he refused. Apparently after talking to his dad on the phone, the parents are worried enough that they want him sent home. It's all so sad and worrisome. But I wonder if there could be something physical going on for him to have these rapid onset symptoms. I'm not in a place to be offering suggestions, nor would I know what tests to ask for. But it's so weird.

[Ottakee]

Desert bloom.....I would suggest basic blood work and a strep test...rapid and longer one.  Strep can cause a sudeent onset of those symptoms without the standard strep symptoms.  Did they rule out drug/alcohol use?  

[DesertBlossom]

19 minutes ago, Ottakee said:

Desert bloom.....I would suggest basic blood work and a strep test...rapid and longer one.  Strep can cause a sudeent onset of those symptoms without the standard strep symptoms.  Did they rule out drug/alcohol use?  

They mentioned bloodwork, urine testing and a CT scan and that it was all clear. I'm assuming the bloodwork would have caught drug use, but they didn't suspect that in him anyway. I will mention the strep to my sister, though at this point I don't know how quickly they expect to get him home.

 

[PeterPan]

22 hours ago, gardenmom5 said:

all of the bolded have also been linked to symptomatic mthf 1298 mutation. 

That's really interesting. We have some other MTHF mutations in our family, but not that particular one. Ds actually has a funky issue with ammonia (his urine reeks of it when he's stressed) that I haven't been able to get an explanation for. So there are definitely more genes involved, but I agree with your point that there are actual things going on that people can pinpoint, that it doesn't have to be as voodoo as the mental health approach and DSM make it sound.

22 hours ago, Tap said:

To the OP...I would absolutely LOVE someone to help me figure out a way to help dd's mental health struggles through healing/treating her body.

The field is nutrigenomics, and the docs will run genetics and then figure out what is glitched and how to jump into that process and get it working right. So, for instance, they'll look at methylation with bipolar, etc. There's undermethylation due to MTHFR defects, but there can be overmuch methyls flooding the system due to things that should have been using the methyls being glitched. So like when you read about people using niacin for bipolar (which sounds crazy on the surface), that's why it would work. But there are more things they can look at besides just dosing niacin (which has a very short half-life and isn't the real problem). For my ds, who is pretty much dangerous and unworkable without chemical interventions, we've been able to get it mostly stabilized with niacin, 5HTP, and vitamin D. The 5HTP and D are glitched because of genetic defects we could identify. The niacin is just a stop gap that cleans up what is left. 

There are docs who work with TACA that you can follow and find through their FB feed, etc. Personally, I think some of them are cracked in the head. There's still a lot of just using supplements medicinally, like pharmaceuticals, without enough thought or knowledge. They're giving really potent stuff to people who, by definition, may not have the language and ability to self-advocate. Me, I just go through the genes bit by bit and do what I can figure out that makes sense. 

[gardenmom5]

11 minutes ago, PeterPan said:

That's really interesting. We have some other MTHF mutations in our family, but not that particular one. Ds actually has a funky issue with ammonia (his urine reeks of it when he's stressed) that I haven't been able to get an explanation for. So there are definitely more genes involved, but I agree with your point that there are actual things going on that people can pinpoint, that it doesn't have to be as voodoo as the mental health approach and DSM make it sound.

The field is nutrigenomics, and the docs will run genetics and then figure out what is glitched and how to jump into that process and get it working right. So, for instance, they'll look at methylation with bipolar, etc. There's undermethylation due to MTHFR defects, but there can be overmuch methyls flooding the system due to things that should have been using the methyls being glitched. So like when you read about people using niacin for bipolar (which sounds crazy on the surface), that's why it would work. But there are more things they can look at besides just dosing niacin (which has a very short half-life and isn't the real problem). For my ds, who is pretty much dangerous and unworkable without chemical interventions, we've been able to get it mostly stabilized with niacin, 5HTP, and vitamin D. The 5HTP and D are glitched because of genetic defects we could identify. The niacin is just a stop gap that cleans up what is left. 

There are docs who work with TACA that you can follow and find through their FB feed, etc. Personally, I think some of them are cracked in the head. There's still a lot of just using supplements medicinally, like pharmaceuticals, without enough thought or knowledge. They're giving really potent stuff to people who, by definition, may not have the language and ability to self-advocate. Me, I just go through the genes bit by bit and do what I can figure out that makes sense. 

that can also be diet.  too much acid in the body?   I dont' remember exactly.  for too much acid (which is very common with today's diet.), just 1/2 tsp baking soda in warm water at bedtime (or at least well away from food times), can reduce acidity.

or maybe it was a sulfur problem . . . 

[PeterPan]

1 minute ago, gardenmom5 said:

that can also be diet.  too much acid in the body?   I dont' remember exactly.  for too much acid (which is very common with today's diet.), just 1/2 tsp baking soda in warm water at bedtime (or at least well away from food times), can reduce acidity.

or maybe it was a sulfur problem . . . 

Yeah, he's been this way since he was little, even when he was exclusively breastfed. It's just in the back of my mind to try to get figured out if I can. He also used to smell like fish, which is genetic as well.

There's a doc in our area who does the genetics and interpretation and is an MD of some kind, but he has really strict policies (must decide in 24 hours, must do what he says, blah blah), and I don't think I can work with that.

[maize]

I think we need to stop viewing mental illness as not physical illness.

Mental illness is physical illness that impacts the functioning of the brain. The brain is an incredibly complex organ and our understanding of the many things that can impact its functioning is very poor.

The stuff we diagnose as mental illness--depression, bipolar, OCD, etc.--these are just labels we attach to clusters of symptoms. There are physical processes that underly the symptoms but they are complex and, at this point, largely not well understood or even identified 

[J-rap]

5 hours ago, maize said:

I think we need to stop viewing mental illness as not physical illness.

Mental illness is physical illness that impacts the functioning of the brain. The brain is an incredibly complex organ and our understanding of the many things that can impact its functioning is very poor.

The stuff we diagnose as mental illness--depression, bipolar, OCD, etc.--these are just labels we attach to clusters of symptoms. There are physical processes that underly the symptoms but they are complex and, at this point, largely not well understood or even identified 

I agree.  I'd also like to add that the word "illness" in this is sometimes more hurtful than helpful.  Sometimes, it is simply an unusual brain -- one that defies the norm in our culture...but because of our need to categorize and simplify things and even understand things better, we've chosen to call it an illness.

[DawnM]

On 1/4/2019 at 7:01 PM, Ottakee said:

It is maddening.....and a commentary on our mental health system.  We were pleased with an excellent pdoc for my kids that ruled out all sorts of other medical issues first....seizures (ok, that was positive), heart issues, thyroid (one needed meds), comprehensive chem blood work (one needed iron supplements and all Vit D), etc and on and on.

Doctors look at physical or mental but most aren't trained to look at both.  Our neurologist said that some autism, mental health issues, etc are due to mitochondrial myopathies.  Those get treated a bit differently.  Then there are the ADHD kids that really have sleep issues and removing tonsils and adenoids helps them, etc.

 

I don't think this is a commentary on our mental health system at all.  Mental health deals directly with the mental presentation of symptoms.  It might be a commentary on our medical system for not checking these things, but how many times on this very board have we heard, "I have been testing for everything under the sun, it has been costly and time consuming and they still haven't found out what is wrong."

Our bodies are complex systems and often times, the same illness presents differently in different bodies.  

[DawnM]

I was on a medication off and on for a few years and every time I was on it, I felt like I was going nuts.  I ended up in therapy twice, felt like I was coming out of my skin, etc.....

Turns out, it was the medication, which was actually supposed to be a serotonin booster....but it had the opposite effect on me.   I don't blame anyone for not catching it, I am one in 500K people who responds that way to this particular medicine.

[ktgrok]

8 hours ago, maize said:

I think we need to stop viewing mental illness as not physical illness.

Mental illness is physical illness that impacts the functioning of the brain. The brain is an incredibly complex organ and our understanding of the many things that can impact its functioning is very poor.

The stuff we diagnose as mental illness--depression, bipolar, OCD, etc.--these are just labels we attach to clusters of symptoms. There are physical processes that underly the symptoms but they are complex and, at this point, largely not well understood or even identified 

I agree except for the last line. Some things are not understood but identified, but some are, and even those are being missed. Again, I point to the boardie whose daughter had freaking anemia. Something VERY well understood and easily identified. And yet her symptoms, ones that many women here easily identified as anemia symptoms, were labeled as anxiety/panic without even checking a simple blood test. 

There is stuff we don't understand, but we need to be checking for the stuff we do understand, at the very least! Checking EEGs, bloodwork, ruling out infection, etc. 

[Ottakee]

35 minutes ago, Ktgrok said:

I agree except for the last line. Some things are not understood but identified, but some are, and even those are being missed. Again, I point to the boardie whose daughter had freaking anemia. Something VERY well understood and easily identified. And yet her symptoms, ones that many women here easily identified as anemia symptoms, were labeled as anxiety/panic without even checking a simple blood test. 

There is stuff we don't understand, but we need to be checking for the stuff we do understand, at the very least! Checking EEGs, bloodwork, ruling out infection, etc. 

I repeat this over and over and over again for parents with struggling kids.  yes, it might be a mental health concern, but first lets get some basic blood work done, rule out other common causes, etc.  Sleep issues are a huge cause of ADD like symptoms in kids.  Certainly not all, but some kids respond very well to having their tonsils/adenoids removed and sleep issues improved.

[maize]

On 1/6/2019 at 7:06 AM, HeighHo said:

That really depends on the illness.  Emotional trauma and/or dysfunctional/abusive parenting in childhood for example can lead to personality disorders, nothing physical for many, just a lack of cognitive therapy.

The things you mention -- depression, bipolar, OCD -- seem to be chemical.  Eric Kandel is a good author to read.

 

Even personality disorders have a physical aspect. The brain is *a physical organ*.

It may be that personality disorders sometimes develop because trauma or other factors (not everyone who develops what we call a personality disorder experienced significant childhood trauma) causes neurons to wire in an unusual way--to form different connection patterns than in an average person--that is still a physical process. And however it happens it does so within the context of everything else going on in that particular brain--stuff that likely disposes some people to develop a personality disorder while others who undergo similar experiences do not (for example, personality disorders tend to go hand in hand with high levels of anxiety and we know anxiety itself can have complex biological causes).

Cognitive therapy, when it works for mental illness, works because it is changing the physical brain. A fascinating process for sure!

Depression etc. being chemical--well, that is a far from settled fact and at best is a gross simplification of reality. They are remarkably complex, like everything in which the brain is involved. Neurotransmitters are one piece in a puzzle that includes genes, gut microbiome, our social web (which profoundly influences our brain from infancy on), other factors such as nutritional status and infection and inflammation and on and on.

We don't have a clear understanding of any of these syndromes. We tend to lump stuff together according to presenting symptoms but that tells us nothing about the etiology.

We absolutely need to do a better job at looking for those physical conditions that we do know impact brain functioning when someone presents with mental health symptoms. And we need to keep researching to illuminate the things we don't understand. 

Edited January 15, 2019 by maize

[lmrich]

Food allergies can really mess with your overall health.

Your physical health and mental health are connected. Absolutely. 

I think part of problem is the - overall health - it seems like my specialists don't talk to each other or really even understand some of the information. There is not one doctor who really and truly is putting it all together. 

[maize]

10 minutes ago, lmrich said:

Food allergies can really mess with your overall health.

Your physical health and mental health are connected. Absolutely. 

I think part of problem is the - overall health - it seems like my specialists don't talk to each other or really even understand some of the information. There is not one doctor who really and truly is putting it all together. 

 

Yes, this is what I have seen as well. Dh can go to six different specialists and each will look at one piece of the puzzle but no one seems to be able to look at all the pieces and fit them together.

Edited January 6, 2019 by maize

[MaeFlowers]

I think the whole thing points to system that treats symptoms, not causes. Not just the mental health system, the whole medical community. 

Just recently I was speaking to a dr about high bp. Her response, "That's easy. You can pills for that." When I asked about making lifestyle changes, she looked at me like I was crazy and said, "Well, I guess that might be good, too."

We've made pharmaceuticals the first response. Part of me blames the drs. It has to be easier to throw pills at things than find the cause. Part of me blames patients because people often wont take on the responsibility to make lifestyle changes. And part of the blame goes to insurance companies.

I'm having a hard time making a cohesive post this morning, but I think there are multiple causes for why our system is functioning the way it is. It's needs an overhaul. We need to think about illness much differently than we do.

[maize]

33 minutes ago, HeighHo said:

 

Do you have a reference for your claim that personality order has a physical origin?  

We will have to disagree on cognitive therapy physical changing the brain in personality disorders.  Most sources I've seen cite a change in worldview that enables the person to get past what is troubling them.

Eric Kandel is an author that has some insight on etiology of brain based diseases such as OCD, bipolar, etc.

https://www.thecut.com/2015/07/a-neurological-level-narcissists-are-needy.html

http://www.imedpub.com/articles/the-cognitive-neuroscience-of-narcissism.php?aid=22149

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1863557/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984893/

https://psychscenehub.com/psychinsights/cognitive-behavioral-therapy-psychosis/

https://www.ncbi.nlm.nih.gov/m/pubmed/17064731/

A few studies, research in this area is still in its infancy but it is moving forward.

[kbutton]

5 hours ago, lmrich said:

I think part of problem is the - overall health - it seems like my specialists don't talk to each other or really even understand some of the information. There is not one doctor who really and truly is putting it all together. 

Or, one doctor says they "Don't believe in" what the other doctor says, or they aren't up on recent research, or they diagnose by stats with you having to prove you are one of the zebras...

4 hours ago, MaeFlowers said:

I think the whole thing points to system that treats symptoms, not causes. Not just the mental health system, the whole medical community. 

Just recently I was speaking to a dr about high bp. Her response, "That's easy. You can pills for that." When I asked about making lifestyle changes, she looked at me like I was crazy and said, "Well, I guess that might be good, too."

We've made pharmaceuticals the first response. Part of me blames the drs. It has to be easier to throw pills at things than find the cause. Part of me blames patients because people often wont take on the responsibility to make lifestyle changes. And part of the blame goes to insurance companies.

I'm having a hard time making a cohesive post this morning, but I think there are multiple causes for why our system is functioning the way it is. It's needs an overhaul. We need to think about illness much differently than we do.

I think it has to be a both/and, but our system will end up reinforcing one mindset or the other in an either/or manner (holding reasonable meds hostage to dietary changes that may or may not help, etc. OR totally dismissing the positive effects of lifestyle changes and being labelled a troublesome patient if you won't take their drugs as a first line). Almost everything that is not working with my body started when I was younger, thin (ranging from optimum to simply much thinner), and I was dismissed. Now my issues are more plain, and it will be blamed on my weight (I would argue that a lot of my weight gain is symptomatic of what's wrong in my body--I currently feel like total crap when I am active--I sometimes get hives and whole bit). Some things have actually improved with my weight gain, which makes no sense to doctors (I think as a result of finding some causes of inflammation unique to me and avoiding them, for instance), and for which I will get no credit. Additionally, parameters for diagnosis have changed, so while my chart probably says something like "negative for this condition," current diagnostic standards (if local doctors are paying attention, which is unlikely) mean that the fallout from actually having met the criteria for having that condition (temporary, due to pregnancy) is still very real for me (in this case, lifelong cardiovascular risk factors). 

And yes, lots of physical things present largely with mental symptoms in some people, particularly at first, and particularly if the gut is involved in any way. It works that way for me. It took a long time for my body to catch up and display additional symptoms, but both sets of symptoms decrease when I find valid ways to address the problem.

[ktgrok]

Another example - this man was SO lucky to get the right doctor at the right time. He very likely could have ended up institutionalized permanently or worse. Instead, he went home after two days because the doctor tried steroids instead of anti-psychotics. https://www.dallasnews.com/business/health-care/2018/12/21/ut-southwestern-doctor-stopped-voices-university-park-mans-head-last-christmas-season?fbclid=IwAR1IdfMyCplfIrSHNuRdWtqc52ZCdJ1sPCQfAHBEboad8kW74cPYD3sFuE8

[kbutton]

17 hours ago, Ktgrok said:

Another example - this man was SO lucky to get the right doctor at the right time. He very likely could have ended up institutionalized permanently or worse. Instead, he went home after two days because the doctor tried steroids instead of anti-psychotics. https://www.dallasnews.com/business/health-care/2018/12/21/ut-southwestern-doctor-stopped-voices-university-park-mans-head-last-christmas-season?fbclid=IwAR1IdfMyCplfIrSHNuRdWtqc52ZCdJ1sPCQfAHBEboad8kW74cPYD3sFuE8

Yikes! 

[ktgrok]

1 hour ago, kbutton said:

Yikes! 

Right! And how many people don't get lucky like that, and end up never knowing it was an autoimmune disease?

[Ausmumof3]

On 1/6/2019 at 3:37 PM, maize said:

I think we need to stop viewing mental illness as not physical illness.

Mental illness is physical illness that impacts the functioning of the brain. The brain is an incredibly complex organ and our understanding of the many things that can impact its functioning is very poor.

The stuff we diagnose as mental illness--depression, bipolar, OCD, etc.--these are just labels we attach to clusters of symptoms. There are physical processes that underly the symptoms but they are complex and, at this point, largely not well understood or even identified 

So so true!  

[ktgrok]

This is the trailer for the documentary about PANS/PANDAS (and I think maybe autoimmune encephalitis too?). I haven't seen it yet, but the father crying about having to read all the medical studies and journals, etc. hit home today. I've spent most of the day reading, highlighting, and annotating journal articles. 

Edited January 15, 2019 by Ktgrok

[Janeway]

I would question the celiac disease DX causing bipolar symptoms, but I guess that depends on the type of bipolar symptoms. Feeling sick can make someone depressed, but not really manic. I could see how she might feel like these are mood swings. And doctors often are quick to jump to a psychiatric diagnosis without looking for physical problems. I had a doctor try to tell me I had depression and tried to prescribe me antidepressants for my symptoms. I knew he was wrong and went on to a different doctor where I was diagnosed with a UTI. That is such a simple diagnosis that I find it insane he missed it. 

[Murphy101]

On 1/4/2019 at 9:28 PM, Ottakee said:

Mergath....you just need Plexus.  Really, truly, you just need Plexus....or the MLM of the month.   I get it.  I get frustrated too.

My post above I mention a lot of other health issues we discussed, ruled out, treated, etc...but truth be told, I still have kids dealing with mental illness and I hand out meds twice a day, every day, for the rest if their lives.  The mental health stuff likely has it's base in a mitochondrial myopathy but they still need meds.  Omega 3s and other vitamins help...but they still need meds.  Treating thyroid helped....but they still need meds.

On the flip side, my nephew when younger suddenly became OCD to the extreme.  For him it was PANDAS and the appropriate antibiotic and it went away and never came back.

What we need is better and more comprehensive mental health care..

What we need is for scientific and medical communities to be the same community and for both of them to stop treating mental illness as though it’s not a medical problem. 

I suspect at some point in the far future mental illness won’t be a thing. It’ll be various brain or nerve system related illnesses.

Currently medicine and science act like mental illness occurs outside the body. Like a decapitation. But it isn’t. The brain is an organ. Nerves are nerves.   It is all connected.  But there’s little medical study into what causes referred issues that present as various mental illnesses .

[ktgrok]

13 minutes ago, Janeway said:

I would question the celiac disease DX causing bipolar symptoms, but I guess that depends on the type of bipolar symptoms. Feeling sick can make someone depressed, but not really manic. I could see how she might feel like these are mood swings. And doctors often are quick to jump to a psychiatric diagnosis without looking for physical problems. I had a doctor try to tell me I had depression and tried to prescribe me antidepressants for my symptoms. I knew he was wrong and went on to a different doctor where I was diagnosed with a UTI. That is such a simple diagnosis that I find it insane he missed it. 

They think there is either an autoimmune encephalitis happening or some other mechanism causing the mania, possibly related to nurtional deficiencies from the intestinal damage. But more likely an autoimmune issue. Celiac can even cause encephalopathy and ataxia. 

[ktgrok]

4 minutes ago, Murphy101 said:

What we need is for scientific and medical communities to be the same community and for both of them to stop treating mental illness as though it’s not a medical problem. 

I suspect at some point in the far future mental illness won’t be a thing. It’ll be various brain or nerve system related illnesses.

Currently medicine and science act like mental illness occurs outside the body. Like a decapitation. But it isn’t. The brain is an organ. Nerves are nerves.   It is all connected.  But there’s little medical study into what causes referred issues that present as various mental illnesses .

Exactly. When a dog came into the veterinary clinics I worked at and the owner said there was a behavioral change the FIRST thing we did was look for physical problems causing it. Infection, thyroid, blood sugar, autoimmune issues, etc. I have no idea why that isn't the case in human medicine. 

[gardenmom5]

On ‎1‎/‎6‎/‎2019 at 9:24 AM, StellaM said:

How can personality disorders NOT have a physical basis ? The mind is an artefact of the brain, which is part of the body. 

I don't really understand this thread, except for Maize's excellent posts. We are our bodies. Our minds are part of our bodies. It's all physical. 

I mean, unless you believe in demons or possession or something. 

'Mental' illness is  illness, like any other illness.

 

 

 I have started treatment for complex-ptsd.  as I have been reading about it, one theme that has come up is how much in common there is between cptsd, and borderline personality disorder - or rather the number of people diagnosed as bpd- but in reality, have cptsd.  other's have also talked about how many who engage in self-destructive behavior, could be diagnosed with cptsd.'  It was actually hard to listen to that description, as I know I could have easily ended up going down that path.

this isn't 'physical' in the traditional sense.  no medication will help.  (and can actually make it worse.) it originates in abuse/neglect in childhood - and that changes the way the brain develops/so it changes the actual structure of the brain.

at least for cptsd - the edmr therapy is helpful.  still hard.  I have no idea what the long-term effects will be.