Welcome to “How to Go to the Doctor,” our twice-monthly advice column by Eva Hagberg Fisher, writer and author of the forthcoming (’18) memoir HOW TO BE LOVED, a distillation of eight years of going to every conceivable kind of doctor following an incorrect diagnosis of intracranial germinoma, idiopathic chronic fatigue syndrome, and anxiety; and correct diagnosis with an intracranial Rathke’s ceft cyst, ovarian dermoid, and mast cell activation syndrome.
In July of last year, when I was driving around the great American plateau trying to figure out why I was getting sick everywhere, I fell into some fairly deep internet holes. Sitting alone in hotel rooms in Kingman, Arizona; Louisville, Colorado; Albuquerque, New Mexico; I kept stumbling across solutions to my complicated and confusing problems. I had mis-diagnosed Lyme that just wasn’t showing up on Bands 41 to 44! I had mercury poisoning that needed hair testing—from this one particular lab—to confirm! I had Chronic Inflammatory Response Syndrome, which only a cholesterol drug adopted for biotoxin patients could cure! I wasn’t getting sick because of mold, I was getting sick of mold plus fire retardant plus bad feelings!
I’ve recently started doing some consulting with patients on things like strategy and how to feel like there are an accurate number of decisions to make. And one thing that comes up again and again and again is, “but I read that X causes [Y horrendous life-destroying damaging disease] so shouldn’t I [undertake ABC extraordinary measures]?” I am a poster child for extraordinary measures. When I was diagnosed with mold sensitivity, I got rid of every single porous thing I owned, and went to the desert, and slept in a tent for two months. Did I need to do all that? In some cosmic retroactive my-life-taught-me-things way, yes, of course. In a medical way, not at all.
And so, over the course of getting sucked into all kinds of un-useful internet and then finally climbing out into a field of relative sanity, I learned some tricks for how to decide what is part of the Useful Internet.
1. Is the person offering a solution claiming that he or she is the ONLY person who can offer this solution? If so, RUN. I encountered a lot of “mainstream doctors are idiots” over the course of my time in the virtual and real desert (I was in Sedona, go figure) that I could get on board with, having encountered a lot of idiotic mainstream doctors i.e. ones who dismissed my symptoms as stress and, probably, being female. But I noticed that sometimes the “mainstream doctors are idiots” came with extreme directives to go towards someone offering a service that “they don’t want you to know about.” Like reverse-ionizing a foot bath so that all your toxins are pulled out through your toes. Or drinking only pH-adjusted water available from one particular water store. It’s one thing for everyone to bond about how we really know nothing about medicine (we don’t); it’s another for a practitioner to imply that she is the only person with the technology to save you. The former can be intriguing emergency-room conversation. The latter is a sure path towards bamboozlement.
2. If you stumble across someone’s helpful website, be sure to read the whole thing. I was pretty invested in the idea of detoxification for a while there, as that’s the majority of the helpful advice I was getting from everyone. So I looked online and found lots of interesting stuff about how we basically are full of mercury if we’ve ever had dental work and/or eaten sushi and/or lived in a city with industry, and how “regular” detox stuff doesn’t work because the chlorophyll has to bind with the broken chlorella and how you have to take it half an hour after howling and thirty-five minutes before sneezing over a liquid probiotic, and then I found this very clear site by a doctor that talked about testing minerals in hair and about how all disease was basically an imbalance of the body and I was like, well, this seems super reasonable (my definition of “reasonable” had definitely… expanded) and I was *about to* rip out some hair and mail it off for testing when I decided to look at the rest of his site. In which there was, no joke, a page about how homosexuality is caused by a mineral imbalance of the body and can be very simply corrected with nutritional balancing and I was like NOPE. And I shudder to think who I would have supported if I hadn’t read all the pages.
3. Patient boards can be helpful, but remember that everyone is on their own path. When I first got into Mold World, I was SO into patient boards. There was so much helpful information! And some of the people I met in Mold World actually *were* incredibly helpful, and had really smart ideas like “get rid of your paper, even if you really love it,” and “shower if you start feeling sick, that’ll help,” and “you’re not making this up, this is really what happens.” And then there were people who I noticed posted over and over and over again, with the same experiences. I remember one particular poster who talked about camping (a common way of doing an initial mold clearing), and writing about having cross-contaminated a tent with toxins from his shoes. I am not saying that this was not his experience. I *am* saying that I was in such a vulnerable position, being so sick (and we’re usually not looking to patient boards for help if we *aren’t* in a vulnerable position), that I completely absorbed and adopted this as probably what was happening to me and went completely overboard with my decontamination and became hysterical at the thought of always breathing invisible toxins and before you know it I was trying to figure out how to ask my husband how he felt about moving to Crete. And if I had paused and thought about my own experience, where I was getting sick primarily in rooms that were damp and moldy but not necessarily from my own shoes, I would have been able to differentiate.
4. Is it expensive? I have spent so many thousands of dollars keeping myself alive over the last few years. And I’m still alive, so I’m fine with it, though I wish I’d had a little more discernment. And also there is regular expensive i.e. it makes sense that renting the infrared sauna for an hour or so would cost $30, and then there is really really bizarre expensive. My mast cell activation syndrome doctor has me on quercetin, a naturally-derived mast cell stabilizer, which works out to being moderately expensive because I take approx. forty thousand capsules a day. And then there is another doctor who developed his own formulation of quercetin + luteolin (another stabilizer) and put it in a particular extract and says this is the only (eeps! Test 1!) formulation that really works, and so I asked my doctor about it, and he said, “it could be helpful but the thing is it’s really expensive.” Some lab tests are expensive because they are really complex and require weeks of doing weird stuff with blood and pee; some are expensive because there’s only one lab that’ll do it and it’s all very mysterious. When I’m undertaking testing or treatment now, I try and be logical about figuring out why something might be as expensive as it is. If I can’t figure it out, I try all alternatives before whipping out my wallet.
5. Does this internet claim to cure ALL diseases? My disease, mast cell activation syndrome, can cause basically every single symptom that exists – digestive issues; cognitive issues; autonomic dysregulation; postural orthostatic tachycardia—and also, it is not the cause for ALL diseases, nor is it ALL diseases. But some internets claim otherwise, saying that actually autism is caused by gluten sensitivity or [I’m not even going to get into vaccines because you know it all]. In the middle of my feeling like every disease must be caused by invisible toxins cooperating with invisible mold spores that were everywhere, I read Lisa Sanders’ Every Patient Tells a Story. And she described diseases and their origins – missing chromosomes or incorrectly-programmed proteins—and I felt myself fall into the warm embrace of biological error. Reading that book sparked a profound shift for me because it reminded me that some diseases just happen; they are not ALL diseases of our modern culture and our contemporary era. Yes, we eat an extraordinary amount of garbage (particularly in America). Yes, our new houses are made out of toxic materials glued together with other toxic materials. Yes, sometimes we get profoundly imbalanced because of emotional stress or physical trauma. And yet there are still just random illnesses that have no cause but a tiny miscued cell.
Remember that there are as many individual disease progressions as there are people. The internet is a beautiful wondrous thing full of people who know what they’re talking about and also people who don’t, and the most important reminder I can offer is that everyone is working with something a little different; and some of us are working with trying to get everyone to give us their money in exchange for the promise of a cure. So be judicious. Read everything. Then take what you like—and what passes the Five Tests of Useful Internet—and leave the rest behind.