Hello everyone,
‘just wondering if anyone takes supplements or receives any homeopathic treatment along with the IVIG. Also interested in any dietary restrictions.
Lisa
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?
thanks -
Cathy
Thank you for this post, it is very informative. I had breast cancer four years ago so I have eliminated chemicals as much as possible in daily living. I also detox and take chlorella as well. I have stopped taking cancer meds and focused solely on SCLS.
I was taking turmeric and continue to take it daily for inflammation purposes. I take weekly salt/baking soda baths to help flush chemicals after cleansing. I eat everything in moderation and try to eat as healthy as possible. I am new to the syndrome so trying to figure out my new normal. i will definitely look into beet powder and have roasted beets regularly in my diet. I also get monthly IVIG infusions and have not had an attack since they started. I was diagnosed Nov’17. The physicians following me feel my attacks are exercise induced so I keep a close eye on my heart rate and activity level.
The one thing I wonder about are my implants I have as a result of my breast cancer and resulting mastectomy and reconstruction. I have read that implants can affect the autoimmune system.
I also believe in mind body connection and trying to live a more mindful, meditative lifestyle.
‘Thank you for your feedback and I will keep you updated if I find anything else that works, but you sound like you have read and researched quite a a lot about alternative methods.
Lisa
For anyone else who's interested in looking at diet and nutrition as a way to help SCLS, here's another piece of info. Of course, none of this is supported by thorough clinical research - it's more like conjecture and case studies, but in the absence of any real cure and given the low risk of trying dietary and nutritional options, I say, "why not try this?".
There is a doctor in the US, Dr. Steven Gundry, who says he's had success reversing autoimmune issues by putting people on diets that avoid plants that are high in lectins. Lectins are chemicals in plants that help protect them from insects - they're like natural insecticides. Foods highest in lectins include beans, grains, potatoes, tomatoes, peppers, etc. Here's a list of foods highest in lectins: https://www.kennethmd.com/foods-to-avoid/
Here's a list of foods Dr. Gundry recommends: https://humanfoodbar.com/plant-paradox-diet/plant-paradox-diet-full-shopping-list-for-lectin-free-diet/
I first heard about this on Dr. Mercola's website, which has a ton of information about nutrition - maybe too much info! Here's a discussion about Dr. Gundry's ideas from Dr. Mercola: https://articles.mercola.com/sites/articles/archive/2017/05/22/beans-toxic-lectin-rich-foods.aspx There are other articles on lectins on Mercola's site, which you can find by using Mercola's search feature. Dr. Gundry has a lot of info on the internet too if you search on him. :)
wishing us all the best of health :)
Cathy