Hi to all,
I basically never post such questions and such problems to be solved by the community but I am kind of stuck and I wonder what other might think about it.
My CFS has a lot to do with gut problems but I can't pinpoint what these problems are. I can't name it so I can't treat it.
To cut a long story short the working theory is:
- I started to have gut problems which casued inflammation, joint pain/arthritis and produced also antibodies against muscles
- Antibodies against muscles cause me neuromyotonia and I have EMG test results confirming that but there is a problem with progressing with the treatment in this area... It's quite possible that neuromyotonia is not associated with gut problems in any way, still they both try hard to make me miserable.
- In the meantime, I got completely CoQ10 deficient. I was bed-bound in 2016-2019. My gut was one big never-healing wound. This was shown during gastroscopy. Zinc carnosine and then CoQ10 helped heal it completely but I also got allergic to many supplements when trying to heal the gut.
- In the meantime I also developed gout. It was not that intense, actually it might not even exist on its own but when combined with joint arthritis from gut, it made things literally 10 times worse. This has been of course taken care of - Allopurinol and sodium bicarbonate and it's gone.
So, how do these gut problems look like?
- A lot of allergies to: tomatoes, pepper (paprika), black pepper, oregano, Iberogast (it helped me but then I got allergic to it), menthol (enteric-coated menthol is used as a treatment for IBS-C but I also got allergic to it), slippery elm, olives (less allergic), corn (even less allergic), wheat, eggs, cheese (even less allergic, to the point that after healing the gut I could start eating them), meat is still a no-no, I'm very allergic to it.
- the symptoms of the allergy? Joint pain/inflammation, tendon pain/inflammation and some kind of stinging
- vitamin C makes this inflammation and pain completely unbearable. For many years I tried to figure out why... For example maybe because it makes my blood more acidic and uric acid crystal crystallize... but no, that is not the correct answer. Vitamin C simply makes immune system much more active and wanting to fight the threat (which is not there of course).
- fasting helps for this allergy. 3 day long fasting will completely rid me of inflammation and even I can eat normally for 1-2 days (ie. food will not cause infammation and even it will not make me constipated). But here is the problem: I can't fast for that long because it makes me feel like I'm going to die. It wasn't like this a few years ago - I could fast for many days. I discovered that pregnenolone makes me more resilient and I can fast for longer. Supposedly, this would mean that I might have adrenal exhaustion but or maybe there is a pregnenolone steal or something like that... unfortunately there are articles on the web that say that there is no such thing as pregnenolone steal and that the mechanism must be different. I don't know what to think. Many years ago pregnenolone at the dose of 100 mg made me sick for many days, now it's helping me... that's kind of strange...
- going vegan after fasting and going vegan generally - helps with the inflammation. I really like being vegan but here is the problem: the muscles react especially badly to potassium that is in vegetables. Actually, this shouldn't happen as normally potassium is not a trigger in neuromyotonia but in my case it is and I also am pretty sure that I have neuromytonia, not anything else (everything else was excluded by exome sequencing as well as the EMG test which didn't show myotonic discharges for example but showed muscles fasciculation syndrome which is one of the symptoms of neuromyotonia - sorry for the detailed description but what can I do... I am pretty sure that when it gets cold the EMG technician will be able to pick up signals confirming directly that I have neuromyotonia and then there will be no doubt, unfortunately this test was done in a very hot weather). This is quite a vicious circle: I can't eat vegetables because of potassium and muscle pain and I can't eat anything else because it will make my joint hurt as well as make me produce more antibodies against muscles what will make them worse
- taking Creon (this enzyme) is simply a terrible experience for me. It probably goes through the gut lining and digests nerves or something because it causes a burning/stinging sensation in my nerves directly. So it looks like a leaky gut.
- I have constipation - I defecate once every 2 days and it's a very small and dry volume. Even when I eat vegetables - the frequency and volume remain about the same.
- the doctors where I live - even paid out of pocket - are completely, completely, COMPLETELY useless. A few notable examples:
* my gut hurts here and here
** (the GI doctor) but the gut doesn't have any pain receptors so it can't hurt you...
* should I take CoQ10?
** (muscle neurologist) yup, you may take it but do you have any problems with your heart? Besides I can't recommend anything like that because it's not a herbal store
Jesus Christ, a muscle neurologist has no idea about mitochondrial cocktail and that CoQ10 is one of the main its ingredients... and so I didn't start taking CoQ10 in high doses in 2015, only 4 years later...
What is worse, you have to be very careful and very aware because they may hurt you by prescribing something completely incorrect. And of course when they hear about CFS then the visit ends abruptly with a referral to a psychiatrist.
And so... my latest plan is to go to a rheumatologist which if unfortunately 5 hours drive from here (and I won't go by train because I'm scared of Covid - in my condition I will not risk it, event though I am fully vaccinated but other people are not at all) but I started to think about it and what can I expect of her? That she confirms my inflammation when many others failed to do so? That she will believe me? I doubt that because I visited a few rheumos and without positive tests they will not believe you. She supposedly can watch your nails (or rather the tissue under nails) under the microscope and confirm that you have the inflammation. So it might be worth visiting her but I'm still very reluctant... 10 hours of driving both sides...
Many years ago I was prescribed sulfasalazine - it worked like a charm - it changes gut bacterial composition. But it was before all of this other crap happened, ie. CoQ10 deficiency and muscle involvement.
So, the question is: what do I do now?
Let's assume for a while that I don't want to go to a doctor - I only want to test myself using tests. Maybe stool tests, maybe blood tests...
But first of all I need to organize these symptoms and turn them into a working theory... I am pretty much sure that I have a leaky gut... but I can't take any known supplements because I am or will be pretty soon allergic to them... but something has to be done...
Mick
I basically never post such questions and such problems to be solved by the community but I am kind of stuck and I wonder what other might think about it.
My CFS has a lot to do with gut problems but I can't pinpoint what these problems are. I can't name it so I can't treat it.
To cut a long story short the working theory is:
- I started to have gut problems which casued inflammation, joint pain/arthritis and produced also antibodies against muscles
- Antibodies against muscles cause me neuromyotonia and I have EMG test results confirming that but there is a problem with progressing with the treatment in this area... It's quite possible that neuromyotonia is not associated with gut problems in any way, still they both try hard to make me miserable.
- In the meantime, I got completely CoQ10 deficient. I was bed-bound in 2016-2019. My gut was one big never-healing wound. This was shown during gastroscopy. Zinc carnosine and then CoQ10 helped heal it completely but I also got allergic to many supplements when trying to heal the gut.
- In the meantime I also developed gout. It was not that intense, actually it might not even exist on its own but when combined with joint arthritis from gut, it made things literally 10 times worse. This has been of course taken care of - Allopurinol and sodium bicarbonate and it's gone.
So, how do these gut problems look like?
- A lot of allergies to: tomatoes, pepper (paprika), black pepper, oregano, Iberogast (it helped me but then I got allergic to it), menthol (enteric-coated menthol is used as a treatment for IBS-C but I also got allergic to it), slippery elm, olives (less allergic), corn (even less allergic), wheat, eggs, cheese (even less allergic, to the point that after healing the gut I could start eating them), meat is still a no-no, I'm very allergic to it.
- the symptoms of the allergy? Joint pain/inflammation, tendon pain/inflammation and some kind of stinging
- vitamin C makes this inflammation and pain completely unbearable. For many years I tried to figure out why... For example maybe because it makes my blood more acidic and uric acid crystal crystallize... but no, that is not the correct answer. Vitamin C simply makes immune system much more active and wanting to fight the threat (which is not there of course).
- fasting helps for this allergy. 3 day long fasting will completely rid me of inflammation and even I can eat normally for 1-2 days (ie. food will not cause infammation and even it will not make me constipated). But here is the problem: I can't fast for that long because it makes me feel like I'm going to die. It wasn't like this a few years ago - I could fast for many days. I discovered that pregnenolone makes me more resilient and I can fast for longer. Supposedly, this would mean that I might have adrenal exhaustion but or maybe there is a pregnenolone steal or something like that... unfortunately there are articles on the web that say that there is no such thing as pregnenolone steal and that the mechanism must be different. I don't know what to think. Many years ago pregnenolone at the dose of 100 mg made me sick for many days, now it's helping me... that's kind of strange...
- going vegan after fasting and going vegan generally - helps with the inflammation. I really like being vegan but here is the problem: the muscles react especially badly to potassium that is in vegetables. Actually, this shouldn't happen as normally potassium is not a trigger in neuromyotonia but in my case it is and I also am pretty sure that I have neuromytonia, not anything else (everything else was excluded by exome sequencing as well as the EMG test which didn't show myotonic discharges for example but showed muscles fasciculation syndrome which is one of the symptoms of neuromyotonia - sorry for the detailed description but what can I do... I am pretty sure that when it gets cold the EMG technician will be able to pick up signals confirming directly that I have neuromyotonia and then there will be no doubt, unfortunately this test was done in a very hot weather). This is quite a vicious circle: I can't eat vegetables because of potassium and muscle pain and I can't eat anything else because it will make my joint hurt as well as make me produce more antibodies against muscles what will make them worse
- taking Creon (this enzyme) is simply a terrible experience for me. It probably goes through the gut lining and digests nerves or something because it causes a burning/stinging sensation in my nerves directly. So it looks like a leaky gut.
- I have constipation - I defecate once every 2 days and it's a very small and dry volume. Even when I eat vegetables - the frequency and volume remain about the same.
- the doctors where I live - even paid out of pocket - are completely, completely, COMPLETELY useless. A few notable examples:
* my gut hurts here and here
** (the GI doctor) but the gut doesn't have any pain receptors so it can't hurt you...
* should I take CoQ10?
** (muscle neurologist) yup, you may take it but do you have any problems with your heart? Besides I can't recommend anything like that because it's not a herbal store
Jesus Christ, a muscle neurologist has no idea about mitochondrial cocktail and that CoQ10 is one of the main its ingredients... and so I didn't start taking CoQ10 in high doses in 2015, only 4 years later...
What is worse, you have to be very careful and very aware because they may hurt you by prescribing something completely incorrect. And of course when they hear about CFS then the visit ends abruptly with a referral to a psychiatrist.
And so... my latest plan is to go to a rheumatologist which if unfortunately 5 hours drive from here (and I won't go by train because I'm scared of Covid - in my condition I will not risk it, event though I am fully vaccinated but other people are not at all) but I started to think about it and what can I expect of her? That she confirms my inflammation when many others failed to do so? That she will believe me? I doubt that because I visited a few rheumos and without positive tests they will not believe you. She supposedly can watch your nails (or rather the tissue under nails) under the microscope and confirm that you have the inflammation. So it might be worth visiting her but I'm still very reluctant... 10 hours of driving both sides...
Many years ago I was prescribed sulfasalazine - it worked like a charm - it changes gut bacterial composition. But it was before all of this other crap happened, ie. CoQ10 deficiency and muscle involvement.
So, the question is: what do I do now?
Let's assume for a while that I don't want to go to a doctor - I only want to test myself using tests. Maybe stool tests, maybe blood tests...
But first of all I need to organize these symptoms and turn them into a working theory... I am pretty much sure that I have a leaky gut... but I can't take any known supplements because I am or will be pretty soon allergic to them... but something has to be done...
Mick