Drinking the kool-aid; or, Alternative therapies are not replacements for medication

Okay.  It’s time to talk about alternative medicine.

Before we start, I just want to revisit a few facts.  I received my science degrees in the US and work in the larger trappings of the allopathic medical establishment.  This means that I have been educated to believe that fact based, peer reviewed data is the most reliable.  This also means that I learned a great deal about the importance of experimental design to eliminate inherent bias.  I am a scientist, and I view information on disease and treatment through this lens.

However, as I have mentioned before, I was also raised in a tradition that allows for the influence of unknown elements.  I grew up around people who read tarot cards, used stones and herbs for healing, and interacted with spirits.  I have carried some of these practices into my own adult life. I am a spiritual person who believes that reviewing a volume of data is the best way to determine if something is an effective treatment.  But I also believe that medicine as a discipline doesn’t explain everything.  I think there are lots of things we still do not know.

Like many other people, it took me years to get diagnosed.  Years of serious pain and exhaustion without any explanation.  When this goes on long enough, you are willing to stray outside of your comfort zone for relief.  I got a lot of books on alternative medicine and read about various diets, cleanses and lifestyles that guaranteed “flushing out of toxins,” “activation of immune system,” and “increasing life energy.”  In particular, I remember reading a lot about the Gerson diet and wondering how on earth anyone could possibly juice that many things and still work. 

I spent several months reading about various alternative therapies and distilling them down so that I could evaluate them scientifically.  What were these diets actually emphasizing?  Were some nutrients in more plentiful supply and some in deficit?  What types of people reported success?  Did they use them in conjunction with other treatments?  I was willing to believe that they could work, but I knew that if they did, it had to be based on science.  I am not opposed to alternative medicine – I just want there to be some kind of proof that it works, and my criteria for proof is probably more stringent than most.

In 2011, several months before I was diagnosed, I went to an acupuncture clinic.  I was in serious pain every day and needed some relief.  I met with an acupuncturist who had no idea what any of my test results meant and wanted to know what parts of my body hurt, what my symptoms were, things like that.  She wanted to know what the physical representation of my illness was.  So I told her.  Again, when you are desperate, you don’t forego any avenue just because it seems unlikely to work.

I lay down on a table and she put a lot of needles in my skin.  It didn’t hurt.  She put some in my ears and she connected them to a low electrical current.  Then she turned down the lights and left. 

For a while, nothing happened.  Then, about 25 minutes after she put the needles into me, I had a legit out of body experience.  All of my pain went away.  It is, to date, the only time I have been pain free since childhood.  I felt myself floating upward and I felt fuzzy and warm.  It was amazing. 

I left that appointment feeling physically very well and intellectually very confused.  I went back to the lab job I was working at the time and pulled up a bunch of research on acupuncture.  There is, it turns out, some peer reviewed research on acupuncture.  It is often used in conjunction with allopathic medicine in integrative programs, sometimes at very well respected institutions.  I felt comfortable with considering acupuncture as a practice that helps. 

Alternative medicine is defined as any practice that is put forward as having the healing effects of medicine but is not based on evidence gathered using the scientific method.  The last part of this statement is important – “not based on evidence gathered using the scientific method.”  This includes things like homeopathy, naturopathy, Reiki and so on.  I’m not saying of them don’t work – I’m just saying that they generally do not have well designed, blinded trials or studies.  That makes it difficult to know if their effect is real or the placebo effect.

While we’re on the topic, let’s talk for a minute about the placebo effect.  To be clear, the placebo effect works.  It is possible for you to have resolution of symptoms because someone is telling you that the pill you are taking will work.  This happens a lot.  It’s an example of the power of mind over body.  So when something works for you, I’m not arguing that it does.  What I am arguing is that it may not work on someone who doesn’t believe that it will.  That is the difference here.  In order for medicine to work on a large scale, its efficacy cannot be ascribed to the placebo effect – because not everyone will believe in it, and thus, it will not always work.

There is a lot of misinformation on the internet.  I know people know that, but it can’t hurt to be reminded.  I find that where there is money to be made, the amount of misinformation is amplified.  A lot of these websites that showcase these panaceas are preying on people like us.  Sick people sometimes do desperate things.  I am not judging here – I have been desperate.  Sometimes when you want something to work so badly, it blinds you to the truth surrounding it. 

I get asked a lot about the relevance of nutrigenomics, Reiki, stuff like this.  (I also get asked a lot about whether or not vaccination is the cause of mast cell disease.  I’m doing a much more thorough post on this in the future, but let me just say this emphatically – it is not.)  I plan to do posts on all of these things, including about folate metabolism in chronic disease, but honestly it is taking me a while because it is really hard to find real data on these things.  There is not a dearth of information on these practices – it’s just that upon careful examination, a lot of it is anecdotal or from a single source.

Unfortunately, sometimes use of alternative practices can be dangerous.  Ehlers-Danlos Syndrome is a common codiagnosis in the mast cell community.  People with EDS make defective collagen and are often hypermobile, especially earlier in life.  There have been cases of people with EDS receiving chiropractic care and dying from a neck and spine dislocation.  It’s not common, but it does happen.  So I have to approach everything as being dangerous to me unless I see data that indicates otherwise.  (And then, if we’re honest, it might still be dangerous.)

I get a massage every Friday night.  It helps a lot with my pain.  I carry around a bag of charged stones to give me energy and help me heal.  I have healing circles with my friends.  I eat low histamine.  (To be clear: I do not consider dietary changes to be alternative medicine.  For people living with mast cell disease, eating low histamine should be a standard tool for improving symptoms.  For people with rheumatoid arthritis, eliminating nightshade vegetables can be a huge help.)  I definitely do some things that might be considered “alternative.”  I also support these activities for anyone, provided they make you feel better.

There are also alternative therapies that have been proven to have utility, particularly in the context of mast cell disease.  Use of Quercetin is one.  Please note that these proven therapies have all been trialed alongside current therapies in a scientific setting. 

What I do not support is the use of alternative therapies to the exclusion of medical therapies if doing so could be dangerous.  There are some people with mast cell disease who are able to become stable with lifestyle modification (not drinking alcohol, avoiding heat and direct sunlight, etc) and do not need medication.  This does sometimes happen.  I am not denying that fact.  But I’m getting really tired of seeing people like that who think that the rest of us drank the mast cell kool-aid and just blindly take pills that we don’t need to.  (Also, I wonder if these people still carry Epipens - no athiest in a fox hole kind of thing, right?)

So let me be really clear: I am not stupid.  I am not uninformed.  I am not a fool.  I am not “buying into the big pharma lie” because I want to see data.  I take medication because I need it to stay alive.  I take medication because I need it to not be puking all day, to not be so brain fogged that I can’t be alone, to not be in so much pain that ending it seems like a good option, to stem organ damage.  In the past, I have tried to stop some of my medications, only to find that (shockingly) my symptoms returned.  Mast cell disease is a zero sum game in this way – most of us will be on medication for life.  You can add things into the arsenal, but it’s harder to take things out. 

Mast cell disease is notable for its heterogeneity.  We are all different.  If you are able to be stable without taking medication, that doesn’t make you smarter than me or better than me.  It makes you luckier than me.  And luckier than a lot of people. 

If you live with mast cell disease without medication, please share what has worked for you and remember how lucky you are.  It’s bad enough that people who don’t have this disease tell us we’re sick because we take pills.  When people with this disease tell us the same thing, they are endangering our community. 

I know how badly some of us want to believe that if we find the right natural therapy, we can reset our bodies and live normally again.  Please be careful.