dysautonomia generally can contribute to extra sweating as can mcas reactions, it's been rough this summer, curious to hear how/if it's been helpful and how you took it.
it's long but very good. very worth your time.
i'm a chronically ill person with various complex conditions who got into herbalism to help support my health. honestly, sharing this here was inspired by the post i just saw of someone looking for alternatives to antibiotics. the truth is, sometimes medication is needed and helpful and alleviates suffering. herbs have been incredible for me but i wouldn't be where i am without medication and it's felt alienating at times the way some in the herbalism community seem to demonize medication.
some quotes i pulled:
"The story I just told about M is one I see, in some version, every few weeks. The teachers vary. The supplements vary. The specific way the community failed the person varies. What does not vary is the structure of the belief. What does not vary is the moral weight. What does not vary is the cost.
There’s the person whose hypothyroidism went unmanaged for six years because levothyroxine was “synthetic hormones” and she was going to support her thyroid with herbs and seaweed instead. Her TSH was over forty by the time she let me run the test. She cried when we reviewed the results together because, somewhere inside her, she already knew. There’s the person with type 2 diabetes whose fasting glucose was averaging over three hundred and who would not take insulin because insulin was for people who had given up. He’d built his protocol around berberine, gymnema, and cinnamon, then added strict carnivore for a year. By the time he came back to insulin his vision was blurry and his feet had started to numb. There’s the person with an LDL never less than 200, who refused statins for fifteen years and had a heart attack at fifty-two and survived it, and still, after surviving it, was not sure if he was going to take the statins. The pharmacist filled the prescription every month. The bottle stayed on the counter.
I’m not telling these stories to ridicule the people in them. I love them. I work with them. They are some of the most thoughtful, careful, intelligent folks I know. They read more than most clinicians I know. They take their health seriously in a way most people don’t. They do not deserve mockery and they will not get any from me.
What I want to do is name the framework that hurt them. Because it is a framework, and once you can see it you can see it operating everywhere in our community. It runs underneath every conversation about toxins and detoxes. It runs underneath every horrified gasp about seed oils and fluoride. It runs underneath every refusal of an intervention that might have helped, every embrace of an intervention that didn’t, every quiet shame at having to admit to the herbalist that yes, the doctor put you on a medication, and yes, you are taking it.
The framework is simple. Everything humans make is contaminating. Everything humans haven’t touched is clean."
...
"The belief is a creed because it isn’t held the way scientific claims are held. It isn’t tested. It isn’t revised when contrary evidence comes in. It isn’t graded for confidence depending on the strength of the data. It is held the way moral commitments are held, and like other moral commitments, it organizes behavior, identity, and community. When M told me she didn’t put that stuff in her body, she wasn’t reporting an empirical observation. She was telling me who she was."
...
"It is not a coincidence that purity rhetoric in the herbal world I came up in has intensified over the last twenty years, the same period in which Western herbalism has struggled with its place in a medical landscape that has both absorbed pieces of what we do and dismissed the rest. The community feels embattled. Its boundaries feel porous. The purity framework, with its sharp lines between us and them, between clean and contaminated, between authentic and corrupted, performs the work of holding the boundary. Every refusal of a synthetic intervention is a small ritual affirming that we are still us."
...
"The list of “toxins” we refuse changes constantly. Twenty years ago it was aspartame, MSG and saccharin. Then it was gluten and soy. Then it was seed oils. Now it’s carbohydrates and EMF. The list updates almost as fast as fashion. If the framework were tracking actual chemistry, you’d expect some stability: substances dangerous in 2005 would still be dangerous in 2025, and the same evidence would govern the same fears. Instead the list changes with the community’s mood. New threats arise; old ones quietly drop off. This is what pollution rules do. They track the community’s sense of what is threatening it, not reliably what is dangerous, and not in proportion to danger.
Take seed oils, the strong one right now. The biochemistry that gets invoked is not fake. Linoleic acid is a real fatty acid. It enters real pathways. Oxidation chemistry is real. Industrial extraction is real. There is a real conversation to be had about the modern rise in added fats, the displacement of whole foods, repeated heating in restaurant fryers, and the hedonic value of ultra-processed food. That conversation should happen.
But that is not usually the conversation happening. The conversation happening is: seed oils are toxic. That is a category judgment pretending to be biochemistry."
...
"Purity frameworks ask belonging questions, not replacement questions. Canola oil belongs to the factory. Sunflower seeds belong to nature. Tahini belongs to traditional foodways. Almonds belong to clean eating. The fatty acid may be similar enough to deserve comparison, but the moral meanings are completely different.
That is why “seed oils are toxic” is not really a toxicological claim. It is a purity claim with a biochemical footnote.
Sugar works the same way. White sugar is contaminating; maple syrup and honey and coconut sugar are clean, though the body’s metabolic response to comparable doses is broadly similar. The moral difference outruns the metabolic one."
...
"None of this is easy to write, and changing my beliefs about these things has been difficult. I spent a decade eliminating seed oils from my diet and teaching others to do the same. The omega-6 to omega-3 ratio argument made sense to me. The biochemistry sounded right. I had students who would not touch a salad if there was canola in the dressing because I had taught them not to.
Then I was challenged to review the science again. I did, and wondered if I’d misinterpreted things. So I experimented on myself. Reintroduced seed oils. Felt fine. Maybe a little better, honestly. Then I went back to the research with even more careful eyes, and was forced to admit that what I had been confidently teaching was not what the evidence actually supported. I had been wrong. I’ve been trying to correct that with students for the last five or six years.
After reviewing hundreds of studies and rebuttals and criticisms of studies, I’m more confident than ever that the categorical refusal isn’t doing the toxicological work it claims to be doing, and I still have a mental hangup about canola oil. I know it’s fine. I know it’s probably better than several of the oils I’d reach for in its place. And when I’m in the grocery store, I still grab something else if it’s available. The intellectual position changed. The unconscious reach didn’t, not fully, not yet."
...
"If I leave the argument where it is, I’ll have done something I don’t want to do. I’ll have left the impression that worry about industrial exposures is silly, that we made this up out of moral panic. That isn’t right. The original concern was a real concern. It got hijacked by a moral framework, but the underlying observation was sound, and it was our community that first sounded the alarm.
Over the last two centuries, and especially in the last seventy years, industrial chemistry has produced an enormous number of novel compounds that human bodies and ecosystems have never encountered before. Some are inert. Some are useful. Some are dangerous. The dangerous ones have done real damage we are still learning to recognize. DDT in the bird populations of the 1960s. Lead in the children of the 1970s. CFCs in the ozone layer. PFAS in nearly every water supply on the planet. Endocrine disruptors at low doses with effects that wouldn’t have been predicted from earlier toxicology models. Microplastics in tissues across the food web. These are real. They matter.
The legitimate concern is that industrial production has moved so fast that regulatory science has not kept up. The doses we are exposed to are the result of choices made by industries with a financial interest in our continued exposure. The health effects are often slow, often subtle, often individual, and very hard to study in the ways that produce confident conclusions. In the absence of good data, ordinary people have to make decisions about what they let into their bodies and their kids’ bodies and their homes. Being thoughtful about that, choosing the less-industrialized option when other things are equal, supporting agricultural systems that minimize exposures, these are reasonable responses to a real situation.
What I want to name is the shift from this reasonable position to the purity framework. They sound similar from a distance. They are not the same thing, and the difference is the load-bearing distinction in this whole essay."
the turn of the story in act 5 is one of the best moments i've had in a piece of media so far this year. it was incredible!!! i asked a while ago how to have motivation to keep going in the story (i was in ch 2 or 3) but it got easier quickly and act 5 was just incredible. just did not see it coming and it hit so hard. i feel like i learned a lot about pacing a story from reading s;g. simply could not put it down after that.
what did you read after s;g? did you move on to the other sci adventure main vns or go through the other s;g stuff? what is the order of the other s;g stuff and is it all worth reading?
have always heard to avoid cutting too many things but i'm reacting all the time and the physical/mental toll sucks. but i don't want to make the sensitivities worse! what worked for you?
i've cut out gluten, dairy, alcohol, vinegar, tomatoes, citrus, i don't eat leftovers, i try to not eat anything canned except beans. i probably need to cut all peppers, potatoes, corn, soy, sesame, everything fermented (i still eat yogurt and gf sourdough), chocolate, coffee (mostly phased out but it's so hard to give up), nuts, spices, most meat. any kind of snack off the shelf that comes in a bag or box i generally react to also. it just feels like a huge undertaking and i'm worried about dealing with how depressing it is as well.
i'm thinking next month will be a transitional month experimenting with stuff/saying goodbye to certain foods for now and then august is going to be a lot of chicken and rice. is this what i should be doing? does it help? my heat intolerance is getting worse which for me is a sign i need to be doing more i think.
i'm also trying to get my dr to put me on ketotifen, i'm on cromolyn and h1+h2, singulair and doxepin. should i see if i can try the ketotifen before cutting things?
what should i do? would also appreciate any elimination/reintroduction success stories.
I talked to someone who said they were diagnosed via regular mri with pillows to support the positions. i just had a supine mri where they actually laughed at my doctor's order for flexion and extension during the mri and said 'that doesn't exist'. so i got a probably useless mri. so i was curious to hear other people's experiences who have done cci evaluation supine and if it was done in a regular mri machine.
i needed an mri with flexion and extension and they told me that 'doesn't exist' despite it being on the doctor's order and all they needed to do was prop my head up with pillows. they actually seemed to think the order was funny because 'that's only xray'. just because they hadn't seen those instructions before doesn't mean they couldn't do it but they wouldn't listen to me. how can i proceed? should i complain or the doctor?
Post exertional malaise is the hallmark symptom of me/cfs.. here's a description of PEM from Johns Hopkins:
"Post-exertional malaise (PEM) is a delayed worsening of symptoms that occurs after minimal physical or mental activity. The key feature of PEM is that the malaise (extreme fatigue and flu-like symptoms) and other symptoms experienced are not in proportion to the amount of activity that has been done. PEM is often delayed and may be experienced hours or days after the activity took place but is most likely to occur 1-2 days after the exertion event. This delay can lead clinicians and patients to believe that symptom exacerbations are random and unrelated to a trigger as they do not attribute their worsened condition to something that may have happened days earlier."
what causes PEM depends on the severity of your me/cfs. some people crash from exercise, some people crash from emotional stress, some people can even crash from sensory overwhelm if they have more severe me./cfs. there is some variety in terms of the delay with PEM, some people get PEM quickly and some people get PEM 24-72 hours following whatever caused it.
there is evidence that me/cfs involves impaired mitochondria (can't generate cellular energy properly), which may be why exercise is generally a bad idea with this condition*. doctors may tell you otherwise (they are often uneducated on me/cfs and people generally think exercise is good for everyone) but the requirements of me/cfs must come before the exercise requirements of POTS, as continual PEM can make your day to day energy envelope smaller in a long term way.
r/cfs is a good resource for asking questions and learning more about me/cfs if it may be a possibility for you. it's a common postviral condition so i thought i'd share about it here especially since exercise is a common topic of discussion.
*99% of people with me/cfs cannot exercise. i have talked to enough people though to know that rarely some people are in that 1% who are typically medicated properly and have enough of a handle on their pacing to know how much activity they can tolerate without exceeding their energy envelope. exercise can only be sustainable if it doesn't make you crash, which it does most of the time for people with me/cfs.
edit: someone in the comments said this post isn't appropriate for this sub, so i looked up the comorbidity rate and thought i'd include it here too:
"A substantial overlap between POTS and CFS has been consistently reported in the literature [10,11,15,16]. The prevalence of POTS in CFS patients has ranged from 19% [7] to 70% [10], whereas studies in cohorts of patients selected for POTS have shown a prevalence of chronic fatigue between 48 and 77% [15,17], and CFS between 17 and 23% [17,18]. Furthermore, increased sympathetic activation and low BVs (blood volumes) have been proposed as pathophysiological mechanisms in both conditions [10,11,15,16].
because it 'doesn't exist'. i am so tired of people acting like just because they don't understand something it must not exist. so i got an mri that i assume is going to be useless.
considering going to the allergist to see if it will help me figure out what is 'true' allergies, what's food reactions from asthma and what's mcas. i suspect i have a combo of all three. though i'm worried that allergy testing will really flare me.
having a lot of apprehension about going though, any tips on how to approach this are welcome. i know it's not always a a good experience.
would appreciate any insight, going to get this checked. thanks!
not sure if my mri will use contrast or if all mris do, maybe i should take a benadryl beforehand? any insight on this?
i like visual novels but also they intimidate me sometimes, just the amount of content. tell me why you love steins;gate or why i should read it without ruining the story for me
also on a side note, what's up with all the side s;g vns? like if i were to read the science adventure series would i read those next or robotics;notes? i finished chaos;head noah a week or two ago.
mestinon (muscle weakness) + oxaloacetate (energy) + cromolyn sodium (mcas treatment) + LDA (energy) + LDN (energy) + h1 and h2 antihistamines (mcas, i rotate the h1, currently using zyrtec 2x daily + pepcid), + singulair (mcas) + miralax, benefiber and triphala (suspected EDS related chronic constipation). next up to try is ketotifen.
biggest non med change is unfortunately, cutting out gluten and dairy. working on eliminating mcas triggers more broadly but there are SO many of them and i rely on others for food so it's hard.
but i feel like i can think more clearly, i crash less and when i crash it's not as hard, i am optimistic for the future for the first time in a long time.
thought i'd share what is helping me in case it helps anyone else! wishing the best for y'all out there ❤️
i can't believe for so many years i didn't realize the poisoned/sedated feeling i got was because of the food i was eating. my fatigue has improved somewhat due to figuring that out.
do i get a dehydrator? if so, what temp for drying herbs? lower temps i assume? i'm extra sensitive to mold so maybe this is the best bet. how do you store your dried herbs?
I've really been struggling with this and they seem few and far between.
these symptoms are the worst for me. leading up to my period especially. i just feel like i'm losing my mind so any insight on what is helpful for the 'the world is ending' feelings and the edginess, anxiety and irritation...considering just taking benadryl for the week but i know benadryl isn't great
my digestion is incredibly poor, the intake output ratio feels significantly off. so i decided as part of trying to address this that i'd try to stop the pepcid. lo and behold within 2 weeks i had a horrific histamine dump late at night with 10/10 gi pain, diarrhea (again, generally constipated, this was like my whole body was flushing everything out) and almost fainting, which is not my normal, I have POTS but I don't faint. someone here told me these symptoms signaled anaphylaxis to them and it really scared me. i have several reactions a day at this point, which sucks a lot. but also i have me/cfs so i have trouble cooking for myself which makes this illness really difficult.
I tried to talk to my doctor about this episode (also restarted pepcid immediately) and she seemed to sidestep the question of prescribing me an epipen. she's trying to get me to take aspirin and singulair, which I can do but obviously that's not an epipen. i will try to bring it up in future again but am worried she's going to turn me down. it was unlike her to sidestep a question as she's generally a really good doctor and works with my requests - she started to read up on mcas and prescribed me cromolyn (i'm on cromolyn, h1/h2, quercetin, but it's not enough). i'd really like to get her to try me on ketotifen hopefully but again she's not going to want me to do all this at once.
but in terms of the epipen, if she says no, what are my options? i get sore throats and i think my throat might swell but i'm not sure. it does feel like it affects my breathing sometimes so i'm scared. i can't see another doctor, i've been sick for many years and she's been the doctor most willing to work with me and help me that i have ever seen.
thanks!