Hi Lisa -
I have been on IViG since getting diagnosed in 2014, so I have not had another episode and can't tell if the alternative measures I've taken have made a difference, but I I'm doing it anyway.
In the alternative health world, the thinking is that autoimmunce conditions are a reaction to the toxins we've put into our environment and food supply. You may know there are something like 80,000 chemicals allowed in food production in the US, from pesticides to preservatives and everything in between, so this makes sense to me.
First and foremost, I have been doing detoxes and cleansing diets and fasts 3 or 4 times a year to give my body a break from the toxins and allow it to cleanse itself of any stored toxins it hasnt had the resources to cleanse. Cleansing and waste elimination are chemical processes in the body - it takes sulpher and methylation and all kinds of complicated processes to transform substances we ingest that can't be used for nutrition into something the body can eliminate. If the body doesn't have all the resources it needs to clear toxins, some will get stored away in our fat until the body can deal with it. Detoxes and cleanses allow that to happen. I do this with the help and advice of a naturepath.
One thing I learned was that if you're cleansing and old toxins are being moved out of storage (fat cells), you need to have lots of soluble fiber (flax meal, psyllium husk, oatmeal, pectin, etc.) in your diet to absorb and eliminate them. Chlorella (dried, powdered algae) is very helpful in binding and neutrallizing heavy metals, so when I take a round of cilantro extract to mobilize heavy metals out of my tissues, I also take split-wall Chlorella to bind them so they don't damage my kidneys on the way out of my body.....it's issues like this that make it important to work with someone knowlegable when doing a detox.
I have changed my diet quite a bit, leaning toward an almost Paleo diet. I'm avoiding sugars, dairy, and grains in order to keep inflammation down. Whether or not it makes a difference in SCLS, inflammation contributes to every other illness, so this can't be a bad idea.
I eat mostly organic, whole foods. I'm not a total purist about diet because I feel if I eat too perfect a diet, I will become hypersensitive to all the junk that's out there and then there are all the consequences of that - like being unable to socialize with people becuase you have huge food issues :)
I have taken lots of random supplements too. Beet powder was recommended to me by a doctor because it's supposed to strengthen capillaries. Another doctor gave me homeopathic opium and homeopathic rattlesnake venom to have on hand in case I ever have another attack. Those particular homeopathics were chosen because they seemed to best match my description of my symptoms.
So, I can't say yet that this has made a difference, but I do feel much better than I did 5 years ago, and I have to hope I'm on the right track, because my insurance will run out in a year and a half, and then God knows what will happen. Moving to Mexico is my back-up plan :)
How about you? Have you tried anything you thought was helpful?