powertool4, having read your question and the thread, I can only say that it confirms my concerns that there is no easy help for us, or even no help at all. Just swell, right?
I've been thinking about posting a question about my condition and a way to solve the problem for... many years actually... but... this would require a description of all of my symptoms and all of my treatments and all of my tests (and there were soooo many). So it's simply impossible to be done. This one time I had to write a detailed description of my symptoms and history - it took 8 hours. Almost no test results were included... And no stupid mistakes, misconceptions that doctors presented.
Yes, reading is faster than writing but the person reading such a long description will likely not grasp the problem in full anyway. Who'd want to read such a long description?
And so every time I have a question, I end up checking with this forum and with google and I somehow manage to find the answer.
And we can concentrate only on certain aspects of your as well as my PEM/CFS problem.
I wouldn't rely on tests too much however. They give a false sense of hope and false sense of being correct. But these were never conclusive for me. And they were misleading for me. The same applies to doctors - a lot of money spent, no results at all, they were almost only unhelpful.
I guess CFS may be defined in this way: the doctors do not help you, only make you worse, haha.
What helped? A thorough analysis of metabolism and trying out many of the conclusions on myself. I spent a lot on supplements. Maybe like 20% of them really worked for me (though they kind of wear off eventually).
So the ultimate answer is to try supplements as well as other methods one after the other, after understanding what side effects they may cause, etc. Thus you may actually to be able to reach a conclusion. After 10 years of this I became quite proficient in counteracting side effects, etc., figuring out what to take, how to take, etc.
But...
If it is so, then it's really a pity because there is no other way. You have to try them out one by one, even if at smaller doses. Even if it takes years. What's the alternative? You have to do something.
I also can't (couldn't) tolerate supplements. I usually have to split a tablet into 4-8 fragments. Or buy very small doses (these are really really not cost-effective, however, so it's better to buy a higher dose and split it). I have to take extraordinary precautions in order not to take an offending component (like rice flour) in a supplement.
But things got better, after some milestones were achieved (ie. I stumbled upon coQ10 among other things). Before coQ10 even a small dose of a supplement was causing me side effects (manganese, comes to my mind, for example), after coQ10 I can take it without such problems.
So, this means that I have to try all of my supplements again. Which won't be that difficult now, but may take a long time. Another such an enabling supplement is vitamin D.
Note that the above are enabling because their scope is so important and so broad. But in your case there may be a supplement that is enabling because you are deficient in it or resisant to it (like in vitamin D resisance) or you simply need much more to see the effect (like in B2 responisive fatty oxidation diseases).
The possibilities are endless here and many times exome sequencing may help find an answer. But in my case it didn't. In my case it's all about the gut and the consequences of the problems with it. Even this coQ10 deficiency - I assume that it's purely a nutritional deficiency.
I've been thinking about posting a question about my condition and a way to solve the problem for... many years actually... but... this would require a description of all of my symptoms and all of my treatments and all of my tests (and there were soooo many). So it's simply impossible to be done. This one time I had to write a detailed description of my symptoms and history - it took 8 hours. Almost no test results were included... And no stupid mistakes, misconceptions that doctors presented.
Yes, reading is faster than writing but the person reading such a long description will likely not grasp the problem in full anyway. Who'd want to read such a long description?
And so every time I have a question, I end up checking with this forum and with google and I somehow manage to find the answer.
And we can concentrate only on certain aspects of your as well as my PEM/CFS problem.
I wouldn't rely on tests too much however. They give a false sense of hope and false sense of being correct. But these were never conclusive for me. And they were misleading for me. The same applies to doctors - a lot of money spent, no results at all, they were almost only unhelpful.
I guess CFS may be defined in this way: the doctors do not help you, only make you worse, haha.
What helped? A thorough analysis of metabolism and trying out many of the conclusions on myself. I spent a lot on supplements. Maybe like 20% of them really worked for me (though they kind of wear off eventually).
So the ultimate answer is to try supplements as well as other methods one after the other, after understanding what side effects they may cause, etc. Thus you may actually to be able to reach a conclusion. After 10 years of this I became quite proficient in counteracting side effects, etc., figuring out what to take, how to take, etc.
But...
What does that mean? You can't tolerate them? Too many side effects, sensitivities?
If it is so, then it's really a pity because there is no other way. You have to try them out one by one, even if at smaller doses. Even if it takes years. What's the alternative? You have to do something.
I also can't (couldn't) tolerate supplements. I usually have to split a tablet into 4-8 fragments. Or buy very small doses (these are really really not cost-effective, however, so it's better to buy a higher dose and split it). I have to take extraordinary precautions in order not to take an offending component (like rice flour) in a supplement.
But things got better, after some milestones were achieved (ie. I stumbled upon coQ10 among other things). Before coQ10 even a small dose of a supplement was causing me side effects (manganese, comes to my mind, for example), after coQ10 I can take it without such problems.
So, this means that I have to try all of my supplements again. Which won't be that difficult now, but may take a long time. Another such an enabling supplement is vitamin D.
Note that the above are enabling because their scope is so important and so broad. But in your case there may be a supplement that is enabling because you are deficient in it or resisant to it (like in vitamin D resisance) or you simply need much more to see the effect (like in B2 responisive fatty oxidation diseases).
The possibilities are endless here and many times exome sequencing may help find an answer. But in my case it didn't. In my case it's all about the gut and the consequences of the problems with it. Even this coQ10 deficiency - I assume that it's purely a nutritional deficiency.
