Nature vs. Technology

For those who dismiss advocates of the “natural” as ignorant of science and deluded by the logical fallacy that natural = best, Nathanael Johnson’s new book is an eye-opener: All Natural: A Skeptic’s Quest to Discover if the Natural Approach to Diet, Childbirth, Healing, and the Environment Really Keeps Us Healthier and Happier. If nothing else, it is a testament to the ability of the human mind to overcome childhood indoctrination in a belief system, to think independently, and to embrace science and reason.

Nathanael Johnson was brought up by hippie parents who subscribed to every “natural” belief and fad. His mother nearly died of a postpartum hemorrhage when he was born at home (he weighed 11 pounds!). His parents didn’t report his birth, and he didn’t have a birth certificate. He co-slept with his parents, never wore diapers (imagine the clean-up!), was allowed to play in the dirt and chew on the snails he found there, was fed a Paleolithic diet, was never allowed any form of sugar, didn’t know there was such a thing as an Oreo cookie, was home-schooled, and did not know that public nudity was taboo until he and his brother shocked the folks at a church picnic by stripping naked to go swimming in the lake. Nudity was customary in his home, and he was encouraged to “let his balls breathe.”

As he grew up, he started to question some of the dogmas he had learned from his parents. He had been taught that good health resulted from forming connections with nature, but he found that nature “generally wanted to eat me.” Now an adult and a journalist, he understands science and how to do research. He tried to read the scientific literature with an unbiased mindset, asking questions about the subjects in his book’s title rather than looking for evidence to support any prior beliefs, and he arrived at pretty much the same conclusions we science-based medicine folks did. But he still appreciates that a natural approach has value, and he seeks to reconcile nature with technology. He calls his book a comfortable refuge from people who are driven to extremes.

When his wife was pregnant, he interviewed home birth advocate Ina May Gaskin, visited birthing centers, looked up statistics about C-sections and fetal monitoring, and decided what he wanted was “No Nonsense Evidence-Based Midwifery.” He and his wife found exactly that in a hospital where nurse-midwives delivered the babies and high-tech care was immediately available for emergencies. All went well, but throughout his wife’s labor and delivery he worried about whether they had made the right choice. Afterwards, he realized that more worry was in store: no matter how he tried to protect his newborn daughter, she would, in the course of her life, be hurt, would suffer, and would eventually die. A nurse told him “Whenever there’s uncertainty or discomfort, people tend to want to fix it. We have absolutely no tools in this culture for simply accepting, but that’s what you have to do sometimes.” These are wise words that patients might do well to consider before seeking the false certainties offered by alternative medicine.

He investigates food and identifies three faulty assumptions:

  1. Molecules Matter, Food is Irrelevant. He says he stopped reading labels because the same type of food molecules may have different consequences if they arrive in a slice of coconut, a steak, or a scoop of gelato.
  2. Everyone Is the Same. No, some of us can digest lactose and others can’t; and we are difference in many other ways. Evolution has molded humans to eat diets as diverse as humanity itself.
  3. Institutions, Not Individuals, Should Be in Charge of Diet. We learn food preferences and food traditions through our culture. Adjusting nutrients at a national level reduced the risks of goiter and neural tube defects and eradicated vitamin deficiency diseases like pellagra, beriberi, and rickets, but obesity became a problem. “In attacking the nutrient-efficiency problems we created a super-sufficiency problem.”

He decides that eating scientifically is impossible because no diet advice is well-supported by science. Both science-based diets and natural diets go beyond the evidence and produce gurus who claim certainty where there is complexity. They are like two sides of the same coin. He argues for rediscovering the pleasure of food rather than just eating to satisfy hunger or to eat the “right” number of calories of the “right” foods. At the same time, he realizes that telling people to eat what they enjoy would be catastrophic for those with metabolic disorders and laughable for those who can’t afford it.

He describes his brief and disastrous experimentation with a raw food/live food diet. He discovers that when he thought he was avoiding toxins, he was just ingesting different toxins, plant toxins. He says yes, there is probably something out there trying to make us sick or eat our brains, but there is very little certainty about which toxins are harmful to the human body in what doses over a lifetime. It would be a worthy goal for science to identify all toxins and remove them from our diet, but “I can’t wait that long for dinner.”

He investigates vaccines. He offers the insight that when parents ask a pediatrician about vaccine risks, they are looking for advice from someone who has seriously considered the risks and the objections of anti-vaxxers rather than just dismissing them. Simple reassurance that science has decreed vaccines necessary is counterproductive. He counters the argument that we have insufficient proof that vaccines are safe by citing Wendell Berry’s advice that the trick is not to find certainty, but to act thoughtfully with partial knowledge. (That’s the trick of science-based medical practice, too.) He comes to a new understanding of vaccines as a “natural” means of protecting children from disease. He realizes that “unnatural” means things he doesn’t understand. The more he learned about things like vaccines, the more natural they seemed.

He puts a new spin on the old canard that doctors only treat symptoms, not underlying causes. After his appendectomy, he asks the surgeon why it happened to him and why it happened when it did. He gets only a vague answer. “Conventional medicine is concerned with helping pragmatically, using the information available to accomplish what it can…you don’t have to know why a fire started to put it out.”

He talks about placebos, describing Benedetti’s research. He suggests there is a role for metaphor in medicine. His mother tried “Earthing” and felt better, less driven, less scattered, better able to enjoy the moment. She realized it might be a placebo effect, but she felt a sense of connection with the earth. He suggests that she was being “healed by a metaphor.”

He argues for a kinder, gentler practice of medicine. He thinks the Flexner report had the effect of eclipsing the patient. And certainly, part of the appeal of “integrative medicine” is the way it returns the focus back to the “whole” individual patient. In a way, it is “a manifestation of love.” He tells about a doctor who prescribed suicide drugs for terminal patients and found that none of his patients actually used them. Their discomfort was not caused by their disease, but by their loss of control. He wished he had realized that was the underlying problem and had been able to remedy it more effectively. “When healing is reduced to a battle between technology and disease, patients lose both responsibility and control.”

He tells about a pediatrician who spent hours educating his patients about asthma, diabetes and allergies, and measured his success by the fact that for the last 5 years of his career not a single patient from his practice had to go to the ER for complications of those diseases. He voluntarily cut his own paycheck by $50,000 a year by teaching the parents of hemophiliac children to administer clotting factors at home instead of coming to his office each time.

Johnson investigates organic farming, industrial pig farms vs. small family operated pig-friendly farms, and forestry management for multi-use purposes rather than as a single crop. He even investigates raw milk, recognizing the dangers of infection, but also learning that milk from grass-fed, pampered cows has a different microbial flora that might conceivably have a beneficial effect on health by protecting humans from more harmful bacteria. He suggests there may be ways to achieve the economies and successes of mass food and lumber technology with more animal-friendly, tree-friendly, and human-friendly methods. He makes it sound as if it’s definitely worth a try.

We are all isolated beings struggling for survival, but we are also part of a larger whole. The technological perspective builds a protective barrier around us; the natural approach sees us as part of a nurturing whole, invites nature in, and fosters relationships. Nathanael Johnson argues for neither the technological nor the natural perspective, but for reunification. He says:

I can’t do without technology: I’m not willing to give up antibiotics, or movies, or ice cubes, or germ theory, or space exploration. But I’m also dismayed by the way faith in technological progress tends to trade away beauty, and wonder, and joy, and all of those slippery, unquantifiable things that – in the end – make life worth living.

There’s a lot of good science and common sense in this book. It gave me a better understanding of what those “natural” advocates are thinking, and of ways in which modern medical practice could be improved. The only quibble I had with it is that he talks about right brain/left brain differences that are not substantiated by recent evidence.

Posted in: Book & movie reviews, Nutrition, Obstetrics & gynecology

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31 thoughts on “Nature vs. Technology

  1. windriven says:

    I’m leaving on a 16 hour flight later today and “All Natural” will accompany me (presuming it is available on Kindle or Nook). There is much about the author’s apparent approach that appeals to me, especially the demand for scientific rigor while recognizing that there is more to a rich and textured life than science alone can deliver.

    I was particularly struck by the physician’s observation that, “When healing is reduced to a battle between technology and disease, patients lose both responsibility and control.” Coupled with the nurse’s recognition that sometimes the appropriate approach is to accept rather than struggle to repair, it says a good deal about the errant trajectory of modern medicine.

    1. Dave says:

      Science can add to a rich and textured life. One of the appeals of the original Cosmos with Carl Sagan was the joy, wonder and beauty he found in science and how well he communicated it. Of course, the wonderful classical music and photography that accompanied the production helped communicate this enormously. Ditto the great series produced by David Attenborough. I remember hearing a statement of a prominent biologist, when he was viewing a blue morpho butterfly, that he spent a lot of time studying things like slime molds and biochemistry, but the beauty of creatures like the butterfly were what drew him to the field. Science is the study of nature, and should not be viewed apart from it.

      1. windriven says:

        “Science can add to a rich and textured life.”

        I would go further and argue that science is a prerequisite. Necessary, but not sufficient.

  2. goodnightirene says:

    I probably have a bit in common with this fellow: Although I never (ever!) identified as a “hippie”, I did bring up my children in a rather crunchy granola way–in a way. I never abandoned science, but did reject some of the cultural norms of my peers. I don’t find the author’s childhood as extraordinary as you do. I had nurse-widwife attended home birth, did co-sleeping, did lengthy breastfeeding, some homeschooling, and nudity, though not specifically “practiced” was a normal part of life and I can’t imagine people being so “shocked” at little boys wanting to swim naked. On the other hand, my kids were fully vaxed, ate ordinary, though mostly vegetarian food, went to regular school (the older ones) and were regularly exposed to science through books, PBS, museums and other activities in addition to school. I subscribed to Mothering magazine when it came out, but quickly cancelled, finding it offensive.

    I think Johnson’s approach has merit and and could offer some ideas for coping with the situations I so often find myself in with everyday encounters with pseudoscience in its many manifestations. Thanks once again for alerting us to an interesting read! This one may actually offer some practical advice.

    1. Kathy says:

      Your kids were fortunate in being given the best of both options, then. Too often it’s a case of one or t’other, with all the anxiety and emotional dislocation that brings. God deliver me from true believers! Who say you have to be either Christian or Scientist, or you are damned (I’m not talking about Christian Scientists, who are neither).

  3. WilliamLawrenceUtridge says:

    Johnson offers some amazing glimpses into the complexities of the issues, complexities that I, despite reading a whole bunch, had no idea existed. It really drove home my personal Dunning-Kruger – it’s really a whole lot more complicated than I realized. He tells both sides of the stories exhaustively, peeling back the layers until he reaches that wonderful spot where both groups agree on the facts and disagee on the interpretations. Far better than most journalists, who at best give brief quotes (of course, this is a book rather than a newspaper article).

    He also wrote the excellent Grist series on GMOs with a similar approach. It’s an excellent starting point and mid-level read for anyone interested who wants a reasonable layperson-level overview of the issues. I quite enjoyed it.

    Naturally he was accused of being a shill for Monsanto and thus his reasoning, findings and evidence could be dispensed without ever having been examined in detail.

    1. Gregor Samsa says:

      That Johnson writes on the angst-ridden website is a tribute to his honesty. Grist is the last place I would have expected to find a good summary of the issues surrounding GMOs. Of course, as you mention, he was immediately accused of being in the pockets of Monsanto and Syngenta.

      1. WilliamLawrenceUtridge says:

        Should clarify – accused in the comments because GMO evokes a knee-jerk response from nearly everybody. As far as I know, Grist itself didn’t put out anything official.

    2. CHotel says:

      Wow, I think excellent may be underselling it. I’m almost halfway through them and itis the best, most concise, well reasoned, and unbiased series on the topic I’ve seen. Dude can write. Might have to pick up the book if it’s even half as good.

      1. WilliamLawrenceUtridge says:

        It is, though he doesn’t touch on GMO in any significant way.

        More than write, he can talk to people to the point of exhausting the topic, which means he doesn’t end up “telling both sides”, he reports what both sides say, to the point of exhaustion. He actually compiles the refutations and debate in a way so many journalists don’t.

  4. Republicus says:

    “Molecules Matter, Food is Irrelevant. He says he stopped reading labels because the same type of food molecules may have different consequences if they arrive in a slice of coconut, a steak, or a scoop of gelato.”

    Isn’t this counter to the scientific consensus? I was under the impression that it was the nutrients/ingredients that mattered more than the form you ate them in.

    1. Harriet Hall says:

      “Isn’t this counter to the scientific consensus? I was under the impression that it was the nutrients/ingredients that mattered more than the form you ate them in.”

      The effects of a specific nutrient are the same regardless of their source. But he is saying that the other things one ingests with the specific nutrient also matter. You can get carbohydrates from Coca Cola or from beans; the scientific consensus agrees that beans are more nutritious.

      1. WilliamLawrenceUtridge says:

        I would love to see Angora Rabbit’s take on this, as I suspect actual nutritional experts have opinions very, very far from the charicatures that CAM proponents make of them. The scientific consensus is very far from seeing 100 grams of table sugar as the same thing as 100 grams of soluble fiber, even though a bomb calorimeter treats them as identical. But how do you convey that to a populace that has extremely limited knowledge about human nutrition?

        Not to mention – the scientific consensus, if you see the choose my plate material as the scientific consensus, explicitly recognizes that there is something called “empty calories” totally independent of the foods themselves.

      2. Republicus says:

        That certainly is how I understand it, but the authors statement that “molecules matter, food is irrelevant” is a faulty assumption sounds, at least to this lay person, to imply that the opposite is true, I.e., “molecules don’t matter, food is relevant”. Where I guess the truth, as I understand it, is “molecules matter, and so does the food a little. Really, it’s complicated–just do your best.”

        I certainly attempt to avoid high-calorie low-nutrient foods, at least in excess, but it’s out of concern for what’s in the food and less the form it takes.

    2. Tobin Lathrop says:

      You missed “three faulty assumptions”
      He is saying that the food matters, raw coconut is probably a better deal for you than a mounds. But yeah it could be stated better..

    3. Young CC Prof says:

      I suppose that if you chose your diet by actually tracking every component of every food, that would be the most accurate way to do it. But that’s way too hard for a normal human being who actually eats several times every single day AND has a job and/or family.

      So, most people who “track molecules” wind up tracking just a few, which leads to an incomplete picture of nutrition, and sometimes, trading in one type of unhealthy food for another that’s just as bad. If you’re looking for a simple heuristic for a healthy diet, “Eat more veggies and less processed junk” will probably have better results than “limit total fat/sugar/etc to X grams per day.”

    4. Angora Rabbit says:

      I found this point confusing as well when I read it, so I’m not sure how to reply. What I can say is that both are true – molecules matter AND food matters. They can’t be separated, because the latter affects the bioavailability of the former. As nutrition professionals, we actually consider them both and neither can be ignored.

      Example: 100g of free glucose is not equivalent to 100g of starch, even though both contain 100g of glucose, because the latter is digested more slowly and thus enters the bloodstream slower. This leads to a lower insulin response and lower circulating serum glucose. We generally appreciate this as a good thing and this is one of several reasons why we would say that the complex carb (starch) is a healthier choice.

      Another example: 1 mg of lycopene in a raw carrot is less available to you than 1mg of lycopene in a can of tomato sauce, because in the latter, the cooking has released the lycopene and made it more bioavailable.

      Lay people generally don’t think about this, but nutritionists definitely do.

      For what it’s worth, I definitely read labels! I look for the product with low sodium and with variations of added sugar buried far down the label or not listed (by law, ingredients must be listed in order of abundance). You definitely want to read labels so that you control what you eat. The forthcoming new labels (for the US) look like a definite improvement. As an example, just last night saw a commercial for a small can of soft drink rather than the 12oz (guessing it will be 8oz). So pleased to see that nutrition policies *can* shape the marketplace!

      1. WilliamLawrenceUtridge says:

        For what it’s worth, I definitely read labels! I look for the product with low sodium and with variations of added sugar buried far down the label or not listed (by law, ingredients must be listed in order of abundance).

        Particularly given the tendency to split what most would think of as “sugar” into glucose, fructose, glucose-fructose, high-fructose corn syrup, maltodextrin, dextrose, maltose, lactose, etc. etc. thus driving it further down the ingredient list.

        I wonder, how many ingredient lists currently read as “Flour, water, milk, palm oil, butter, eggs, egg whites, glucose-fructose, maltodextrin, citric acid, sodium” that would be better written as “Flour, water, sugar, milk…”

      2. goodnightirene says:

        Thanks for coming in on this AR–you said it much better and with more authority than I could have, but I was thinking the same thing–honest. I definitely read labels as well with particular attention to the often-shocking serving size. This will change on the new label, although I’m not sure it’s going to help to simply acknowledge larger portions!

  5. Angora Rabbit says:

    “Their discomfort was not caused by their disease, but by their loss of control.”

    I realize this was in the context of assisted suicide, but I thought it was actually telling of the CAM motivation. How much of this is due to the patient’s perceived or actual loss of control? As Windriven pointed out, the patient’s perception is a huge factor. I suspect Stephen R might be “successful” not because he is effective, but because he has a sympathetic ear and is really good at making the patient feel empowered. Being sick can be scary; I would certainly rather have a sympathetic caregiver (and also effective, however!), especially if my condition was chronic and not self-limiting.

    I rather think that the attraction of CAM has very little to do with medicine per se and much to do with psychology and satisfying a patient’s psychological need. This is not an original observation. But it raises the question of whether we should include as therapeutic for chronic conditions, a psychological component that addresses those patient needs and perceptions?

    1. WilliamLawrenceUtridge says:

      I think there’s a huge case to be made that the real benefit of CAM and CAM practitioners is a form of nonspecific medical psychotherapists. You get an hour of undivided sympathetic attention and careful probing about medical problems and complaints. That alone must be hugely beneficial for alleviating subjective stress. Does nothing for being actually sick, but makes you feel better about your situation.

      But again, that has nothing to do with specific nostroms, and has a lot to do with the economics of health care delivery in the US – limited time with patients, incudements to limit that time further, and insufficient practitioners.

      I would suggest retraining the lot of them, but I suspect they would be over-used by patients who get a false sense of security, not realizing that the person sitting across the desk from them stands a very good chance of not realizing your cancer is getting worse.

      1. Eldric IV says:

        “You get an hour of undivided sympathetic attention and careful probing about medical problems and complaints. That alone must be hugely beneficial for alleviating subjective stress.”

        I have seen this abundantly in my time as a pharmacy intern on clinical rotations and as a resident. My “in-training” position and typical status as an “extra” on the service means I generally have a lot more time to spend with patients than the pharmacist usually does. I also tend to let people talk without interrupting or redirecting to keep the conversation ‘on track’ as is necessary in regular practice due to time constraints.

        As a consequence, patients have told me time and again how much they enjoyed speaking with me and how much better educated and just plain ‘better’ they feel afterwards. As knowledgeable as I may be on diabetes or heart failure, it would be my opinion that the listening ear was by far the greater part.

      2. Sean Duggan says:

        As regards insufficient practitioners, that is one area where the extensive education the medical profession requires of its practitioners compared to its CAM counterparts works against them. There’s so much to learn and so much schooling required. It’s a lot of work and I highly respect the people who devote themselves to it, my sister included. There is some relief in the form of Nurses and Nurse-Practitioners, but there just never seems to be enough.

        There’s a parallel between that and the Roman Catholic church’s shortage of priests, or the shortage of teachers for some schools. The requirements keep going up, because no one wants to risk having someone who doesn’t have all of the answers, or know how to find them, and the rewards remain pretty flat, which means that fewer people are able to go into it, particularly with how expensive debt tends to be. I hear lawyers are facing the same problem these days.

  6. Davdoodles says:

    I think what he’s referring to may be what I’ve heard called the “suicide option”. Where a patient has a terminal illness or severe depression, they often feel that they are trapped and cannot escape their circumstances. The sense of powerlessness can be a significant, even dominant, factor in their distress.

    For some people, the simple knowledge that they have the option of suicide helps them to live with their condition. Because (I’m told) they now feel they are living with the condition by choice, and not because they have no option but to live like that.

  7. SaraLinWilde says:

    I can’t wait to read this book. I nearly wept with gratitude at the idea that somebody actually thought to talk about us metabolic-disorder folks in a book. I’m not sure I’ve ever read any book with diet advice that applied to me, including when I took a course in early childhood nutrition. (I have phenylketonuria, or PKU. I know it’s rare, and probably shouldn’t be addressed in every single book about nutrition, but it’s nice to be acknowledged when somebody attempts to dispense one-size-fits-all diet advice.)

  8. Chris says:

    Ordered this after reading your post…

    It’s refreshing to hear about books like this. I love the points you bring up and it’s a step in the right direction towards the utter confusion in ‘natural’ vs ‘scientific’ medicine.

    Also – I discovered your site recently, and I’m blown away. I am an artist/musician, but I’ve had a profound interest in science and skepticism my whole life. It’s genuinely near impossible to ascertain some semblance of truth when it comes to medicine and your site is a breathe of fresh air…. highly enjoyable as well.

    I know this isn’t the place to comment about Lyme disease, but after reading a handful of posts on the subject on SBM I just wanted to offer my situation… most of the lyme posts had commenting discontinued. This isn’t meant to be overly personal… I have no underlying motivation but I’m just genuinely confused as I deal with Lyme personally, and I wanted to seek true scientific and skeptical ideas. I truly can’t see any alternatives for my situation, and I also wanted to provide a point of view that may help others with their preconceptions of chronic lyme sufferers…. believe me…. I know some of them are loonies. I’m also genuinely hoping for some real guidance from the smart people checking out this site.

    I’m a skeptical, science-loving human being. I was raised in the gorgeous but isolated Blue Ridge Mountains, in a fundamentalist Christian environment. But I was always asking difficult questions, obsessed with books on fossils and the human body, always pursuing. By twelve or thirteen I was pretty convinced that religion was made up by man. I love trying to root out my own biases, I love questioning whether something is truth or delusion, I’m a secular, open-minded guy and I’m certain I’ll change my mind on many many things through my life. I’ve changed my modes of thought on so many issues as I pursue deeper information.

    Life and science is always interesting, and always surprising.

    So I just wanted to put that in context when I say I’ve been suffering from what has been diagnosed as Lyme disease, and I find myself in the worst position imaginable for someone like me; I don’t relate to most chronic lyme patients and the quackery and pseudoscience that often slips through the cracks in those circles. But on the other hand, modern science wants to paint me into some kind of hypochondriac, and even a handful of your articles tend to justify chronic lyme as some sort of psychological affliction. I’m sure it is for many. But (not to be an awkward downer, but really, just looking for conversation and offering info) I’m suffering from something. And it’s been seven months. And it totally stinks.

    I’m 31. I haven’t suffered many health concerns (I had a viral infection in my eye from two months of touring with a rock band once…). I’m in my prime. I’m motivated and excited and happy. My career has just started and picked up in a major way. I’m creating music for national ads and film in NY.

    I was bit by a tick. The bite lump stuck around. My doctor dismissed it. Months later, after a great run at the gym, I had a painful shin splint from overdoing it… that night, my nervous system freaked out and I had palsy all over my hands and legs and even my brain felt tingles. Somewhat facetiously I told my GF “well, this is my last night.” I went to the doc, who said I need to drink more water. I asked about the bite again. “Drink more water”. No symptoms until…

    Months later, Nov 2013, I developed extreme neurological symptoms which surfaced almost immediately, with mild abatement but little change since. Screaming tinnitus in my left ear (which later, despite doc saying it was a musician problem, moved from my left ear to my right ear….also, I’m obsessive with ear plugs and tested perfect hearing). Extreme fatigue, like the feeling when you have a cold or flu. Odd, intense dreams. Strange rashes. The palsy was back, with frequent brain tingles. Dizziness. Vision blurriness and spots. The doc said “allergies”. The symptoms continued and got worse. I went to a host of other doctors, who said things like “depression”, or simply, “I don’t know”. I’m on my own at 31…. I have to do all this myself, from doctor to doctor, begging them to consider pathogenic causes. I’ve always been interested in the body, and my own perception of “self”. My most objective assessment from the inside was that something virulent was having a field day. And the tick bite…. it all started to point to Lyme, which, finally, I was diagnosed with a few months ago.

    I was put on antibiotics, which immediately had an effect…. again, I just want to point out that I’m highly skeptical and cautious. I know the placebo effect can do incredible things. But…. it really felt profound. This “fatigue” isn’t like, I’m kinda tired today. It’s like, a physiological drain, like being sick. Also, I know too much about the way the immune system works…. I know how important the body’s natural flora is. I’m not stoked about the drugs here…

    So what do I do? After trying to go off the antibiotics, I had a horrible relapse that involved memory problems and speech problems and all the other bizarre symptoms, like the odd rashes and a host of other neurological things.

    I’m a big fan of ousting bias. But what am I to do? I’m suffering from something which is only dubbed “real” by questionable non-scientifics… but the medical community outright denies me the right to figure out what’s happening to me…. and with every ounce of my being I swear…. something new, debilitating, and profound is happening inside my body. My relationship is over, my job is limiting my time now (not a sob story, I’m perfectly happy somehow anyway…). I encourage you and your amazing site and scientific ethos…. but I’m begging you, don’t use your perception of the quacks as any kind of proof. I may be the rare exception here, but there seem to be many of us. Real, smart, open-minded people who just want to stop talking about it all together and get on with their lives.

    Is modern medicine just in the dark here? I subscribe to the belief that human ingenuity and scientific discovery can elevate humanity to almost any level it wants… I also believe that life-altering suffering from pathogens should be a thing of the past, or at least that should be our goal. I see Lyme as EXCELLENT territory for finding new discoveries about pathogenic behavior and the neural system. But I beg you…. accept that there are real people suffering something interesting here. Don’t be too dismissive of the chronic lyme thing….. I don’t know what it is…. but it totally stinks. Any advice would be appreciated….

    Sorry for the tangent. But very relevant in the Lyme world – so many proponents of “natural medicine” and it’s so difficult to tell what’s what.

    1. Andrey Pavlov says:

      Hi Chris,

      I think that Dr. Hall might be in a better position to address the specifics of so-called chronic Lyme since she has spent the most time researching it and writing about it. Dr. Novella is our resident neurologist, but obviously none of us can make diagnoses or recommend anything but the most general and sanguine medical advice over the internet.

      I, for one, think you sound perfectly rational and reasonably frustrated by your situation. I am genuinely sorry that you are in it. Of course, I am taking you fully at face value since I have no reason to suspect otherwise.

      In terms of what to do – and others here more qualified than I can chime in – I honestly think that the only rational course of action is to find a good neurologist to develop and solid patient-physician relationship to work with and get to the root of the problem.

      The reality is that chronic Lyme might be a thing. We can’t prove a negative (e.g. nobody ever has such a thing. EVER) but it simply isn’t characterized and what is typically described simply does not fit with what could reasonably be called chronic Lyme. I could go on for ages about what it could possibly be, and every permutation therein. But the point is nobody here can reasonably tell you one way or another.

      One thing I can say is that some diagnoses are hard and some are simply never made. We strive to make sure that doesn’t happen, but we do have limits; both in terms of medical science and personal/practical limits as well.

      Keep up with the excellent outlook, skeptical view, and positive outlook and work towards a solution with a neurologist that you can work with. It absolutely sucks and it is absolutely not fair. Unfortunately the universe cares not about fair and sometimes those of us with bad luck must live the best they can with the hand they are dealt.

      If there are more specific questions about general medical or scientific topics, I or others here are typically always happy to help. I wish we could be of more specific help to you on this topic, but unless someone else here thinks otherwise, I’m afraid there simply isn’t much more we can add.

      But perhaps some of the other esteemed commenters here will have something to add.

    2. WilliamLawrenceUtridge says:

      If you read the scientific articles on Lyme disease that Dr. Hall linked to in her last post on the topic it is not that doctors are absolutely skeptical of some sort of post-Lyme issue (see, for instance, the table on page 1426 of this article). It’s that people with a vague cluster of symptoms, that could be caused by any number of things (including purely psychogenic, the category most hated by proponents of CLD), attribute their symptoms to Lyme disease and any effort to suggest alternatives is utterly resisted and alleged disease becomes identity. One thing to always keep in mind – yes, you had a tick bite. Yes, you might have had Lyme disease. But there’s no guarantee that your current symptoms are related. They could be – but you don’t know, and chances are you will never know. And with months between your tick bite and now there are myriad possible causes for your current symptoms. But in any case, blinded tests of chronic antibiotic consumption hasn’t been shown to improve symptoms for patients, so there’s no reason to take them for years.

      One thing you could try is looking on pubmed for articles about Lyme and the Lyme controversy, focusing on the articles and in particular the citations that are referenced when they talk about possible sequelae to Lyme infection, and tracing them forward to subsequent work. A large problem is that the CLD advocates pollute the discourse and the literature making it difficult to sift out the good scientific work on possible post-infective sequelae, so keeping an eye out for serious scientific discussions while ignoring the conspiracy-mongering ones is probably worthwhile. You could also try contacting the authors of the skeptical articles and asking them for information and citations on the valid scientific work on Lyme infection sequelae. Many times authors are quite good about providing copies of otherwise-hard-to-acquire articles, and some are happy to point to related, promising work.

      And, of course, lists of LLMDs are lists of people to avoid.

      There is definite evidence for post-infective fatigue and malaise; influenza is noted for being particularly enervating, for months after the fact. Our own Dr. Crislip has commented on this several times, but never indicated any special expertise on the topic. Lyme might have such an outcome.

      Two further points:

      – be patient. If such a post-infective condition exists, chances are it will ease with time. Try to stay as active as you can be, eat as healthy as you can, and pace yourself according to your new limitations. You might even try recording how you feel and how much activity you are capable of (i.e. how long you stayed away or slept, how far you could walk, how fast you could walk, etc.). Small changes over time can add up, and without a reminder of past limitations, you may not realize that you’re actually improving.

      – consider that there may be psychogenic components. Illness can range from purely psychological to purely physical, but they can overlap. Even if whatever is causing your fatigue has zero direct impact on your brain, the purely physical limitations you face can have psychological consequences, and the impact on your mood, optimism and general outlook need to be recognized and if not addressed (because sometimes all you can do is endure) then at least accomodated. There is also a (quite controversial) school of thought about chronic fatigue syndrome, Morgellon’s, chronic Lyme and other unexplained illnesses that hypothesizes they are a form of somatization, a way of dealing with psychological issues in a physical form. I’m not saying “it’s all in your head” (and even if I did – that doesn’t mean purely psychological issues are any less serious because of this fact), but it might be worth thinking about how the changes and stresses in your life could be affecting your mood, energy and drive. Even good stresses are still stressful, and can be tiring. It is possible to be physically drained by mental exhaustion, and that is not a reflection of weakness on the part of anyone.

      That’s my take on things – be gentle with yourself, adjust your expectations and activities, keep researching and be open-minded. And don’t assume the solution lies in a pill, which is what CLD proponents want you to think.

      1. Andrey Pavlov says:

        WLU makes excellent points and cogent suggestions.

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