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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hip or anyone...my question is..I have leaky gut. I would love to try this protocol, but I am so sensitive to supplements. I wonder if one could cut the dose down or try these things individually?? I also need to do something with the leaky gut but I am so hesitant as to spend more money and get sick. I also have the methylation gene mishap where you are supposed to take methylfolate and I can't do both protocols at one time as I won't know what is doing what. You basically have to be your own scientist.
Has anyone tried what Hip is recommending in a smaller dose. I am also horribly allergic to grape seed extract. Makes my IC go nuts.
Well I've just looked at the perfecthealth diet link Junto provided and guess what? its my diet to a T.
I've been on it for about 4yrs now, but its not made me better. Any ideas where to from this if it is leaky gut?
Do you have dairy? Some people are sensitive to this. The leaky gut diet used by Maes and Lunis excluded milk.
I think that it is also necessary to reduce exertion and stress as much as possible, as these too will acidify the blood, making it harder for the gut to achieve and maintain a healthy pH.
No I don't have any dairy and not for a long time. I am rarely able to exert myself so that leaves stress? Other than that which my illness causes I don't have any real source of stress, for which I am so grateful as I know many have.
hi me sci. you make some very interesting observations.
i tried gluten free, wheat free, and a few other diets in 2007 (been sick since 1993) but they made me feel awful and sicker. however, now i have to wonder whether it wasn't some kind of die off.
if i respond to the next trial of xifaxan, i will surely try some kind of diet. everything is so slow going, i wonder if i won't just spend the rest of my life trying to get a handle of this disease and then die..whats the pont
What leaky gut fixing supplements have you been taking for the last year, MeSci?
It's not just a matter of having "tummy problems" and "feeling better" when avoiding certain foods. My entire body swells up extra when eating gluten, eggs, and cranberries. It's an objective sign of dysfunction which anyone who cares to can observe. I'm also not aware of any explanation for such a systemic problem other than an immune reaction to the foods which trigger it.If people feel better and if it resolves their symptoms and discomfort by playing with their diets and chopping and changing supplements then that is brilliant. Do not get me wrong. So long as it doesn't lead to other complications.
It's not just a matter of having "tummy problems" and "feeling better" when avoiding certain foods. My entire body swells up extra when eating gluten, eggs, and cranberries. It's an objective sign of dysfunction which anyone who cares to can observe. I'm also not aware of any explanation for such a systemic problem other than an immune reaction to the foods which trigger it.
I didn't have any of these problems prior to getting ME.