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Javizy wrote: Have you been getting enough protein as well? I was reading a good explanation about getting 600 total calories from carbs + protein. The balance is up to you, e.g. 100g protein, 50g carbs, 75g of each etc. Doing that means your body doesn’t need to do any conversion to get glucose, and spares your liver. If you eat less than 50g carbs and drop into ketosis, you’ll need over 100g of protein to prevent muscle wasting. The protocol diet could easily exasperate other health problems if you’re not careful with your nutrient intake.
I was thinking the same way as you and as I really don’t have much knowledge about the right way of eating (in terms of carb, protein, fat ratio) I did play around with it. I increased protein, then I increased fat, then I wrote down everything I ate and tried for few suggested ratios on few sites (even Bee’s ratio) and finally added some carbs back (I went to phase two) just to test it and no matter what I did or ate these symptoms stayed the same. It did lift just a little since I went into phase two, but not that much to be honest. I also made sure I ate a lot of foods and this didn’t change anything. I’ve been testing myself it for two months, one on strict diet and one on phase two and no matter what I did, these symptoms were still here. Oddly enough, my candida symptoms did not come back when I went to phase two and this surprised me as I was sure I had more work to do there. I paid for several tests testing minerals etc. to see if it was nutrition that caused it and all came back fine. Then I stopped all my supplements for about a week to see if some of those are making trouble and nothing changed. Increasing salt intake did help a bit (I was only slightly low on sodium on each bloodwork), but not that much either. So you see I did try so many things before I went back to doctors and I could not figure it out myself.
As this disease is described as immune system’s attack on muscles, it kind of makes sense that symptoms were worse when immune system got a bit stronger as it was fighting me even harder. What troubles me though is that I am on an anti-inflammatory diet (this is what strict diet is for the most part) so why do I have so much inflammation still (if inflammation is the autoimmune response) and how bad would it be then if I was not on this diet!
I don’t know Javizy, I’m just a bit lost here. I did read a lot about it these past couple of weeks and kept quiet until the diagnosis was confirmed. I do think that I understand what this disease is and there is no mention about natural treatments for it so this makes me so uneasy.
I actually decided to get another test before making a decision about the corticosteroids. There are three tests that are generally done for diagnostic. Blood test is, as usual, inconclusive and often incorrect. EMG is pretty sure for the muscle weakness, but there is also a muscle biopsy which my doctor felt there is no need to do as the symptoms match, the EMG confirms it and a biopsy of my small intestine mentions autoimmune diseases (oh, that biopsy actually confirmed everything we read about inflammation of the small intestine and leaky gut and in the end points to food allergies, autoimmune diseases, IBS etc.) but I would like to be apsolutely sure this diagnosis is correct for two reasons. First, if I will make a decision to take such an awful therapy, I want to be sure I know what I take it for. Second, if it’s not the right diagnosis then it means it’s something else and I hope it’s not something worse like MS (which was the first suspicion of several other doctors who lead me to the current specialist) and if I leave it untreated or mask it with low dose of corticosteroids, I could get into more trouble down the line. I am where I am today because I could not get a diagnosis, not the right one I needed anyway…