Posted 11/1/2015 4:52 PM (GMT -7)
Ashaline, glad I could help.
Mine started similar to your daughters. I got the West Nile and just felt like I had a hard time recovering from it. I was having what I thought was relapses. At first they were 3 or 4 months apart, I would get real sick and it would take a few days to recover. The episodes kept getting closer together and longer until I was like your daughter, feeling well for a day or two then sick for a couple weeks. At this point I started on Noni juice and liquid Ion. This helped pull me out of it for a couple years. I still had Post Exhertional Malaise (this is the deciding factor if you have ME/CFS) but I didn't know that what what it was or that that was what was making me sick.
I went off the Noni and Ion after a couple years because it was upsetting my bowels, that is when I started slipping.Eventually I went down and it took me months to get control of it. I studied and figured out what I was dealing with.
What I learned is this: First off, if your daughter has ME/CFS she may need to quit dancing. Post Exhertional Malaise, from what I understand, can keep getting worse and worse until it becomes almost, if not absolutely, impossible to recover from. For this reason, we have to limit ourselves to keep from setting that off. Please do some research on this. This is probably why your daughter is sick a day or two after dancing. As of today, I do ok most days, never feel the way I used to before I got sick, but definitely better than I did before I changed my diet. I work full time but by the weekends, I spend a lot of time on the couch.
As for diet, I have cut out most sugar, chocolate, soy, wheat, most grains, processed foods, potatoes, other tubers, most squash, anything with coloring or chemicals.
What I do eat is most fruits and vegetables and meat. .
A typical days food looks like this:
Morning: Sliced apple and peanut butter. A few Cinnamon almonds
Or fruit smoothie with nut butter in it.
Or banana and almonds
Lunch: Cesar chicken salad or other green salad with chicken or leftovers from the night before.
Dinner: Stir fry veggies with different sauces, chicken or fish usually.
Or vegetables cooked another way, steamed and some protein to go with it.
I have started adding some legumes back and do have a little rice occasionally. For instance tonight I made lentils with vegetables and chicken. I don't eat raw cabbage any more, have to cook it or it tears up my stomach. I do have a little coffee but that is on my list to get rid of next. I can eat corn and pop corn is my go-to snack. If I go to a restaurant I have to be very careful, some of the "spices" they use have chemicals in them and can really make me sick. Once I get sick from food, it can take a day or two to get over it.
If I eat certain things like chocolate or potato chips, I get sick within a few hours or the next day. Some foods though - especially if I just eat a little every day, like wheat, will take several days before it catches up with me. Those are the hard ones to pin point because they don't affect me right away so I keep nibbling at them thinking it is ok. I can eat caramel and a little sugar so I have been doing that, but I am not feeling as good as I could so I am going to get more serious about cutting out those things and coffee. I also have some cheese and yogurt, but not that much and they need to go too - do not drink milk at all.
I can do a lot better and really want to get to the next level. I am also going to try the Noni again.
I hope this helps you. Keep in mind that every one is different. Although I just met up with an old friend the other day that has been suffering from this same illness and as we were talking we found that we had the same triggers, so it does make me wonder if maybe there aren't more similarities than we realize.