Tales From the Fainting Couch

[nokidsmom]

On 7/4/2018 at 11:34 PM, Black Aliss said:

And when it doesn't, walnuts are the usual substitute, so yeah, stay away from any pesto you don't make yourself. If I were making pesto for a friend with nut allergies I might try making it with sunflower seeds, but more likely I'd just make a basil and garlic puree.

Usually when I make pesto, it's typically just the basil and garlic, no nuts.   No known allergies but I have some trouble digesting nuts.  It still tastes good!

[chaotic life]

I do the basil and olive oil as well, and apparently will stick to that permanently now. Sometimes having food allergies make me scared to eat.

[AuntKrazy]

@chaotic life - I'm sorry about your food allergy related incident, but very glad that my mention of pesto having pine nuts in it may help you in the future!

I seriously felt like I nearly accidentally poisoned my husband's BFF when that happened.  It honestly terrified me, especially as we were way up in the mountains away from medical help.  

Also, if you are looking for a thicker textured pesto, I often add some hard grated parmesan cheese into the food processor along with olive oil, fresh basil, and garlic. (although then it's not vegan friendly)

 

[FundieCentral]

What a great thread! 

I admittedly have very little contact with fundie circles these days, so I can't speak about fundies, but I have seen these things pop up among some of my very left-wing, slightly conspiratorial friends as well. These are people who are usually very, very concerned about the environment and their health (generally a good thing), and thus vegan, anti-vax, anti-car, anti-cellphone/electronic devices that emit radiation, you catch the drift. 
Anyways, but these things have been coming up so much. Some people only drink filtered water out of their own glass bottle for fear of contamination even though our water here is extremely clean (it gets tested constantly) and the laws regarding what's allowed to be sold as bottled water are very strict. 
I know that there are things that science cannot yet explain, and I am always a supporter of more research and scientific progress. But honestly, these sorts of things strike me as straight-up conspiracy theories, and when I see the Youtube videos supporting them I always feel like I'm watching an Illuminati recruitment video. Oh yes, and for a small fee of 199.99 you can always buy their extra-special water filter   Alex Jones has a series of health products as well, against the "female hormones" in the water that are making all men pussies. So people across the cultural spectrum seem to be drawn to these types of things. 

Regarding the diseases specifically, count me in the camp of people who tend to be skeptical about these sorts of diagnoses. They are such catch-all diagnoses that sometimes I worry that other than making the patient feel like they are "properly" sick, they really offer very little in terms of treatment pathways and might even distract from seeking solutions in lifestyle changes (quitting fundamentalism?) rather than oils, ointments and salts. 
My personal theory is that in addition to underlying mental health conditions, as discussed above, some common illnesses look much more severe and long-lasting when the body is constantly forced to function. And, I bet that some diseases circulate a lot when you have 13 kids. By the time all 13 have had a stomach bug, a year is over. If I wouldn't see a doctor or take medication, I might also potentially conclude that it's something in the food. 
Personal anecdote: I also had severe fatigue for a while and it turned out to be a very delayed response to an Epstein-Barr infection. There was nothing I could do except rest for a long time, which I luckily could - and eventually it got better. These fundie maidens can't take a few months off to recover. I would think an illness such as the flu or mono can drag on for months and months with aches, fatigue, loss of appetite etc if you don't take medication and can't rest - long beyond when it would show up on a standard test. 

I also agree with the notion that sometimes these diagnoses can serve as a "legitimate" reason for people to either withdraw from a bad life situation or "explain away" problems they are trying to cover or are unable to bring up in their social circle. Someone I knew a few years ago was absolutely convinced that she had chronic lyme disease due to constant fatigue, exhaustion, stomach aches, headaches etc. To my knowledge, she had never actually been bitten my a tick. But at the time, she also really didn't like the college she was at, the people she called her friends, and there were some issues with hyper-critical parents. Practically, the diagnosis of chronic lyme disease allowed her to leave the college on medical terms (implying a partial tuition refund I think?), end friendships with the explanation that they weren't supporting her in her illness, and caused her parents to really rally around her. Her symptoms were certainly real. But I deep inside still think that what she had wasn't so much lyme disease as a difficult and stressful situation, maybe some other infection even that dragged on, and in some ways lyme disease gave her an excuse to make changes in her life and get support from people where she otherwise didn't know how to justify her decisions or ask for support. Again, I wonder if the same is true for a lot of the fundie women. It's a way to say "no, I've had it, now I want everyone to look after me for a while after I've spent 30 years always putting everyone else first." Which is definitely legitimate. I'm just afraid that in these kinds of cases, a diagnosis of chronic fatigue, or lyme disease, or fibromyalgia won't clear the path for attacking these symptoms at their root cause. It really hurts me in my heart to know that none of these women consider either counseling (there are also great Christian counselors out there) or putting their well-being before the laundry. 

EDIT: Just looked up Dr. Gary Kaplan and his practice for integrative medicine. He also strikes me as a business-man with extra special treatments. His website has an online shop, he sells his own book with a "magic cure" (according to amazon reviews relaxing, exercising, eating healthy food, going out in the sun?), and his practice does not accept insurance, medicare, medicaid, or worker's compensation. Come on, Captain Obvious. I get a very bad vibe :/ He strikes me as the kind of guy who preys on vulnerable people and tells them things their family doctor could have told them, for a small fee of 500$ or something a session.

[Rachel333]

21 minutes ago, FundieCentral said:

I have seen these things pop up among some of my very left-wing, slightly conspiratorial friends as well. 

I find it amusing how much overlap there is between that group and fundies when it comes to this kind of stuff. 

[Mrs. Bean]

2 hours ago, Rachel333 said:

I find it amusing how much overlap there is between that group and fundies when it comes to this kind of stuff. 

So true! 

[apandaaries]

8 hours ago, Rachel333 said:

I find it amusing how much overlap there is between that group and fundies when it comes to this kind of stuff. 

ITA. Zsu and PP are perfect examples of this overlap, along with so many more. 

[The Mother Dust]

On 7/3/2018 at 9:26 PM, Briefly said:

Strongly suggest to her that she (and her husband since it might be ignored without him) put it in writing and sign it, and are very clear about her wishes and that they expect them to be honored.  Her doctor sounds like a real jerk and I would be afraid her would be the type to do what he wants and not his patient.  Just my opinion! I've had to go RedHeadTexasWoman (as we call it) on a couple of doctors before.

I agree he sounded like a jerk.  Women really do have to stand up for themselves regarding their healthcare. I'm happy to meet another fighter. :-)   Your idea about her writing her wishes down is good, unfortunately she has already had the surgery.  For reasons too extensive to get into here, I actually won't find out what happened until the end of July, but I'll let you guys know if you are interested.  Feel free to remind me.

[Thorns]

So, other health care providers here. I work in pediatrics. Our reflex, when faced with something we do not really understand that has a huge impact on the patient, is to consider Inborn Errors of Metabolism (IEM). It is not that often that we find something (it is over 1500 diseases, which in them selves are rare, but it does ad up), but when we do it is very satisfying and explanatory to the patient and the family. Some of these diseases can present in adulthood, or only present in instances of stress.

In "adult" medicine, how often do you consider it and/or screen for it? (Using urine samples between/during bouts of symptomes eg).

(I feel I order these tests all.the.time, and I never did or really thought of the possibility before I started in peds....)

 

[chaotic life]

So, other health care providers here. I work in pediatrics. Our reflex, when faced with something we do not really understand that has a huge impact on the patient, is to consider Inborn Errors of Metabolism (IEM). It is not that often that we find something (it is over 1500 diseases, which in them selves are rare, but it does ad up), but when we do it is very satisfying and explanatory to the patient and the family. Some of these diseases can present in adulthood, or only present in instances of stress.
In "adult" medicine, how often do you consider it and/or screen for it? (Using urine samples between/during bouts of symptomes eg).
(I feel I order these tests all.the.time, and I never did or really thought of the possibility before I started in peds....)
 

I consider them, absolutely. However, most of the most severe and most common would be detected in childhood unless the child did not receive sufficient care in childhood. My most common starting point is thyroid, immune deficiency, autoimmune and metabolic/immune deficiency. It takes a careful history and interview to determine where to look first.

Oh and infective processes!

[louisa05]

4 hours ago, chaotic life said:

 

I consider them, absolutely. However, most of the most severe and most common would be detected in childhood unless the child did not receive sufficient care in childhood. My most common starting point is thyroid, immune deficiency, autoimmune and metabolic/immune deficiency. It takes a careful history and interview to determine where to look first.

 

Oh and infective processes!

But with someone like my mother-in-law would you not look for other causes for the complaints first or do you always jump straight to autoimmune, thyroid, etc? 

Had she gone to a doctor initially, her complaint was muscle aches , pain in both shoulders and sometimes the upper arm, fatigue and feeling sad. 

But with questioning, you could have found out all the following things: 

*She only had the muscle aches on the days after she attended a yoga class (that she did not actually want to take) and was completely inactive otherwise

*She had been operating an espresso machine 30 hours a week or more for over ten years

*Her parents had recently had a serious car accident which killed her father and left her mother unable to care for herself without a significant amount of assistance that she was providing from over 50 miles away

Would not all of that give you insight that perhaps her complaints were not autoimmune at all? 

Just curious. Of course, when my mother-in-law did go to a doctor, her daughter the yoga teacher had already convinced her it was fibromyalgia and she absolutely will not question it no matter what. 

 

[chaotic life]

But with someone like my mother-in-law would you not look for other causes for the complaints first or do you always jump straight to autoimmune, thyroid, etc? 
Had she gone to a doctor initially, her complaint was muscle aches , pain in both shoulders and sometimes the upper arm, fatigue and feeling sad. 
But with questioning, you could have found out all the following things: 
*She only had the muscle aches on the days after she attended a yoga class (that she did not actually want to take) and was completely inactive otherwise
*She had been operating an espresso machine 30 hours a week or more for over ten years
*Her parents had recently had a serious car accident which killed her father and left her mother unable to care for herself without a significant amount of assistance that she was providing from over 50 miles away
Would not all of that give you insight that perhaps her complaints were not autoimmune at all? 
Just curious. Of course, when my mother-in-law did go to a doctor, her daughter the yoga teacher had already convinced her it was fibromyalgia and she absolutely will not question it no matter what. 
 

Oh no! I don’t “always” jump to those options. But I am a holistic practitioner. By the time they get to me they *usually* have ruled out the easy answers. If they have NOT, my first step is to assess those joints themselves. But fibromyalgia is not joint pain NOR muscle pain.

I would first ask enough questions to figure out which was more prominent, joint pain or muscle pain and assessed for the easy explanations of those first if they had not always been ruled out.

So, not that I am an ortho but if no one had x-rated those shoulders that would be one of my first assessments if joint pain was more prominent. When muscle pain is, I check whether they feel on statins (and if so check for muscle deterioration) then magnesium and vitamin D. Her emotional history is a factor if the basic, simple medical issues are ruled out.

[Hane]

One thing I like about my GP and gyno: They always start out their exams by asking me what’s going on in my life.

[keen23]

On 7/8/2018 at 9:29 AM, chaotic life said:

 

I consider them, absolutely. However, most of the most severe and most common would be detected in childhood unless the child did not receive sufficient care in childhood. My most common starting point is thyroid, immune deficiency, autoimmune and metabolic/immune deficiency. It takes a careful history and interview to determine where to look first.

Oh and infective processes!

I turn 40 next month, and my thyroid went rogue on my this year and tried to kill me. No previous symptoms (that I noticed, exhaustion is just a part of working full time and having kids). I am surprised at how many women get thyroid issues around their 40th birthday.

[chaotic life]

I turn 40 next month, and my thyroid went rogue on my this year and tried to kill me. No previous symptoms (that I noticed, exhaustion is just a part of working full time and having kids). I am surprised at how many women get thyroid issues around their 40th birthday.

Not only that but thyroid symptoms can be VERY vague and someone would have no idea to connect them to one common denominator.

[AliceInFundyland]

11 hours ago, Hane said:

One thing I like about my GP and gyno: They always start out their exams by asking me what’s going on in my life.

My gyno is cool. He’s the one who got me hooked up with a psych rn for meds. And since I have to get a hysterectomy in a few years I have faith that he will be sensitive to whatever strangeness (hopefully none) happens in my hormones afterward.

[Jellybean]

On 7/8/2018 at 5:29 PM, chaotic life said:

 

I consider them, absolutely. However, most of the most severe and most common would be detected in childhood unless the child did not receive sufficient care in childhood. My most common starting point is thyroid, immune deficiency, autoimmune and metabolic/immune deficiency. It takes a careful history and interview to determine where to look first.

 

Oh and infective processes!

I think that your point about inadequate care in childhood is very interesting, and relevant to fundies and ex-fundies. 

My own personal experience is long so I’ll put it under a spoiler so you can skip over it more easily if wall o’text is not your thing.

Spoiler

I was brought up by a mother who was somewhat crunchy to start with, and then was ‘saved’ when I was about 7 (my father was alive until my late 20s, but very non-confrontational). By the age of 7 I’d had numerous surgeries, was totally deaf in one ear (apparently from mumps). I’d had all the recommended vaccines at the right time, but still had measles, mumps, pertussis (whooping cough), rubella several times (before and after the vaccine, which I think was given when I was about 11). I had a LOT of infections (mainly ear and chest) which were treated with antibiotics sometimes and with homeopathic remedies. 

Once my mother was saved, I got the new experience of not being allowed to say ‘my’ deafness/hearing loss, or ‘my’ asthma, for example, because that was ‘claiming’ what I wanted for myself. The homeopathic remedies continued, but prayer and anointing with oil/holy water were the main things used to treat breathing problems, ear infections, joint pain, etc. I was also taken to rallies by famous faith healers.

I was off school for almost a year due to chronic fatigue syndrome when I was 13-14. I had a huge number of hospital admissions (including ICU) and was discharged AMA by my mother from ICU and regular medical and surgical wards on a number of occasions because God told her that I was fine. Once I was an adult, my mother could no longer book me out of hospital AMA, but she still had a huge amount of control over other things.

I was diagnosed with a neurogenic bladder failure at 21, autonomic (parasympathetic) failure and mast cell activation disorder in my mid-20s, intestinal failure at 30 (I’m TPN dependent), and went no contact with my mother at 35 (I’m now 37).

There were a number of occasions in my teens and early 20s when a doctor or surgeon considered Ehlers-Danlos syndrome (EDS) but were told in no uncertain terms (by my mother) that I did not have that. The general feeling was that I would have been diagnosed in childhood, so it wasn’t explored further until after my fourth wrist-stabilisation surgery, and I was diagnosed when I was 27, by which time it was too late to do anything about most of the problems it had caused. EDS is believed to be closely linked to some mitochondrial diseases (mito), and I was given a tentative diagnosis not long after my EDS diagnosis.

I feel frustrated that genetic conditions and inborn errors of metabolism were ruled out in my case because people thought that they would have been diagnosed in childhood. 

If you’d asked me if I had adequate medical care in childhood, I would have said yes, quite strongly, until a couple of years ago, and even now would probably say that I did have adequate care. I had all the right vaccines at all the right times and saw a doctor when my mother felt it was necessary (or when a teacher took me to hospital/called an ambulance). I saw my audiologist regularly and wore my hearing aid all the time.

Essentially, I think that if I had seen @Thorns or @chaotic lifeas a child, I would probably have been diagnosed in childhood. Unfortunately, not all medical practitioners are like you. 

There are lots of ‘generalist’ medical professionals who know a little about lots of things, but I think there’s sometimes a tendency to think that there isn’t much more to know. Things are black and white, and people either have a condition or they don’t, and the treatment should be the same for most people.

I recommend ‘How Doctors Think’ by Dr Jerome Groopman to absolutely everyone. It’s easy to read with lots of anecdotes and examples, and makes it very clear that there is still more to know about a lot of things in medicine.

 

[Terrie]

I was thinking of the discussion of diets when I picked up a book from the library on French eating and entertaining. It's written by an American woman who married a French man. Unfortunately, she can't manage to talk about how the French approach to food is different from the American one without bashing the American approach (plus, she seems to view the American approach purely through the eyes of an suburban 80's childhood). Like, the French don't eat candy, because candy is childish. But you can still have chocolates, because those are sophisticated and adult. 

[chaotic life]

Jellybean, I am so sorry that your condition was not caught in time to prevent many of the worst complications.

It’s not that I think every complicated case is EDS but I have a fair amount of EDS patients simply because no one screens for it at all. Any by fair amount I mean half a dozen but that is far more than I ever would have thought I would have. I don’t know nearly enough about EDS which is completely frustrating to me. Most of the literature says to monitor and medically support the parts of the body impacted by connective tissue.....fabulous! Anyone happen to know a part of the body NOT impacted by connective tissue?? How TF do I monitor all of those things? At least some of them are identifiably by DNA testing and have a pattern that is more predictable. That hypermobile joint variant is freaky and has so little info still. Worst case I ever had was a patient who had been seeing rheumatology for FIVE YEARS. They diagnosed it but never explained it and never followed up on anything but her pain issues. Excuse you? That is not proper care! Didn’t even put her on vitamin C.

I had a preteen whose mother was convinced she had a tropical disease that had laid dormant since they had returned from the tropics when she was a toddler. I did full diligence, even consulted an infectious disease friend to confirm there was nothing that could do that. He and I both agreed it was almost certainly CF. I couldn’t figure out how it would have slipped through newborn screening and then learned the newborn screening for CF started after that child was born. (She wasn’t screened as we had all assumed). Mom quit bringing her and refused the testing. Nothing more I could do. But yes I absolutely consider metabolic disorders when a situation calls for it. Not everyone wants to listen when I screen for them though.

I actually had a friend consult with me years ago. He little girl had developed abdominal bloating, then a never ending eye twitch. Two months later they had tested her for every cancer and leukemia, and dozens of other bizarre neurological issues and metabolic conditions and mom was getting scared. She contacted me because she felt they were pawning her off by sending them to GI. It was before we had reliable celiac blood testing and I was stunned. I thought they started with GI given the bloating and abdominal pain was her first symptom. Nope, they got distracted by the eye twitch and apparent seizures. I was at a loss and said I really wasn’t sure since obviously they would have ruled out celiac’s first....

Nope. Never tested for celiac’s at all. Took the kid off the wheat and she went from death’s door to thriving again. That was the case that reminded me NEVER forget to rule out those basic metabolic conditions.

[Jellybean]

47 minutes ago, chaotic life said:

Jellybean, I am so sorry that your condition was not caught in time to prevent many of the worst complications.

It’s not that I think every complicated case is EDS but I have a fair amount of EDS patients simply because no one screens for it at all. Any by fair amount I mean half a dozen but that is far more than I ever would have thought I would have. I don’t know nearly enough about EDS which is completely frustrating to me. Most of the literature says to monitor and medically support the parts of the body impacted by connective tissue.....fabulous! Anyone happen to know a part of the body NOT impacted by connective tissue?? How TF do I monitor all of those things? At least some of them are identifiably by DNA testing and have a pattern that is more predictable. That hypermobile joint variant is freaky and has so little info still. Worst case I ever had was a patient who had been seeing rheumatology for FIVE YEARS. They diagnosed it but never explained it and never followed up on anything but her pain issues. Excuse you? That is not proper care! Didn’t even put her on vitamin C

This made me laugh because I was diagnosed a decade ago and have never been given (or told to buy) vitamin C.

Would you mind if I PM you? I’d be happy to share whatever I’ve learned about EDS, and maybe ask you some questions.

Thank you for what you do - I’m sure that your patients tell you how much they appreciate you and hope you know how valuable you are. 

[chaotic life]

This made me laugh because I was diagnosed a decade ago and have never been given (or told to buy) vitamin C.
Would you mind if I PM you? I’d be happy to share whatever I’ve learned about EDS, and maybe ask you some questions.
Thank you for what you do - I’m sure that your patients tell you how much they appreciate you and hope you know how valuable you are. 

You can absolutely message me. As I said, I am definitely no expert on EDS but what frustrates me is that there doesn’t seem to BE an expert on the condition at present.

[Thorns]

On 7/10/2018 at 11:43 AM, Jellybean said:

I think that your point about inadequate care in childhood is very interesting, and relevant to fundies and ex-fundies. 

My own personal experience is long so I’ll put it under a spoiler so you can skip over it more easily if wall o’text is not your thing.

  Hide contents

I was brought up by a mother who was somewhat crunchy to start with, and then was ‘saved’ when I was about 7 (my father was alive until my late 20s, but very non-confrontational). By the age of 7 I’d had numerous surgeries, was totally deaf in one ear (apparently from mumps). I’d had all the recommended vaccines at the right time, but still had measles, mumps, pertussis (whooping cough), rubella several times (before and after the vaccine, which I think was given when I was about 11). I had a LOT of infections (mainly ear and chest) which were treated with antibiotics sometimes and with homeopathic remedies. 

Once my mother was saved, I got the new experience of not being allowed to say ‘my’ deafness/hearing loss, or ‘my’ asthma, for example, because that was ‘claiming’ what I wanted for myself. The homeopathic remedies continued, but prayer and anointing with oil/holy water were the main things used to treat breathing problems, ear infections, joint pain, etc. I was also taken to rallies by famous faith healers.

I was off school for almost a year due to chronic fatigue syndrome when I was 13-14. I had a huge number of hospital admissions (including ICU) and was discharged AMA by my mother from ICU and regular medical and surgical wards on a number of occasions because God told her that I was fine. Once I was an adult, my mother could no longer book me out of hospital AMA, but she still had a huge amount of control over other things.

I was diagnosed with a neurogenic bladder failure at 21, autonomic (parasympathetic) failure and mast cell activation disorder in my mid-20s, intestinal failure at 30 (I’m TPN dependent), and went no contact with my mother at 35 (I’m now 37).

There were a number of occasions in my teens and early 20s when a doctor or surgeon considered Ehlers-Danlos syndrome (EDS) but were told in no uncertain terms (by my mother) that I did not have that. The general feeling was that I would have been diagnosed in childhood, so it wasn’t explored further until after my fourth wrist-stabilisation surgery, and I was diagnosed when I was 27, by which time it was too late to do anything about most of the problems it had caused. EDS is believed to be closely linked to some mitochondrial diseases (mito), and I was given a tentative diagnosis not long after my EDS diagnosis.

I feel frustrated that genetic conditions and inborn errors of metabolism were ruled out in my case because people thought that they would have been diagnosed in childhood. 

If you’d asked me if I had adequate medical care in childhood, I would have said yes, quite strongly, until a couple of years ago, and even now would probably say that I did have adequate care. I had all the right vaccines at all the right times and saw a doctor when my mother felt it was necessary (or when a teacher took me to hospital/called an ambulance). I saw my audiologist regularly and wore my hearing aid all the time.

Essentially, I think that if I had seen @Thorns or @chaotic lifeas a child, I would probably have been diagnosed in childhood. Unfortunately, not all medical practitioners are like you. 

There are lots of ‘generalist’ medical professionals who know a little about lots of things, but I think there’s sometimes a tendency to think that there isn’t much more to know. Things are black and white, and people either have a condition or they don’t, and the treatment should be the same for most people.

I recommend ‘How Doctors Think’ by Dr Jerome Groopman to absolutely everyone. It’s easy to read with lots of anecdotes and examples, and makes it very clear that there is still more to know about a lot of things in medicine.

 

Oh, I do not belive that I catch all there is, but I do try to think things through. One of my favourite books (The art and science of bedside diagnosis; for those interested) emphasises the "Review of systems", which I have taken to mean "if faced with something you do not understand, take a step back, study the patient/the child, go through all the organ systems and the history carefully, and think again". And to never assume something has been done, even in fairly regulated socialist Norway.

BTW, the infant screen does not test for every type of CF there is (at least not the one used here I live). 

EDS, I might not have thought of that, esp in a child, but with all those diseases that you were presumably vaccinated against I would check for antibody titers, to see if you actually had the expected effect of them. If not, that can imply immunocompetency issues. For instance.

I have had patients that I could not figure out, and in retrospect (I have changed jobs since then), I might have considered IEM if I knew what it was. But, the old saying holds, you only find what you look for.

[louisa05]

Are newborns routinely screened for CF in the U.S now? My cousin was born with it 1991 and not screened. He was diagnosed at about 10 weeks after other causes for digestive issues were ruled out. 

[Evangeline]

57 minutes ago, louisa05 said:

Are newborns routinely screened for CF in the U.S now? My cousin was born with it 1991 and not screened. He was diagnosed at about 10 weeks after other causes for digestive issues were ruled out. 

As of 2010, all US states began screening newborns for CF. Most states had started before that. The screenings only test for the most common mutations, however. If CF is suspected, they still perform the sweat test. 

[keen23]

We had to do genetic counseling for my third pregnancy in 2007. We found out, among other things, that neither my husband or myself are carriers of Tay Sachs or CF.