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Hello!
Well, it's happening yet again - my symptoms have completely shifted. This happened in 2007, then 2017, then 2020 and more recently, a week ago. When it happened in 2017, I speculated that it was due to starting a methylated B complex. I developed mostly neurological symptoms and reactions to food, IBS, sensory issues, etc. I somehow improved significantly/was in remission for a few years, but have no idea how because I took hundreds of supplements/herbs (what was I thinking) and also rested a lot.
In 2020 I'm also pretty sure that I shifted symptoms when I started changing supplements non-stop. I also introduced B1 (including TTFD form) and I'm quite sure that caused things to shift - I had severe insomnia, muscle tension, anxiety, weird symptoms and reactions, IBS, but no fatigue and no PEM! I also thought I could be oxalate dumping, since I changed my diet drastically and it was previously high oxalate for some time.
Somehow, it more or less improved - again, I tried so many things and I also ended up spending time in a different climate (hot and humid), but I continued with the B1 for several months. I had no fatigue. I then ended up in a different country (dry arid, high altitude) and lost access to the TTFD and some other supplements. I ended up fatigued, but also very depressed. In fact, I went from such a high in the hot, sunny place to such a low state in the other place (it was winter), that I also suspected Bipolar, but I had plenty of other symptoms. Thinking about it now, I was depressed and also crying a lot (but mostly during luteal phase - PMDD) in 2017, in the lead up to the methylation supps and sudden shift in symptoms.
I started a B complex a week ago - non-methylated folate as folinic acid, other Bs, only 15mg TTFD and 50mg Befothiamine (first time taking it). I also started the transdermal B12 oils. I guess I should have gone more slowly. For some reason, I also added NAC for a few days. Well, something shifted and the extreme fatigue and muscle pain and weakness shifted to IBS symptoms and other symptoms, as usual! I stopped the B supplements (apart from the B12 oils) a couple of days ago and the IBS immediately stopped, but I am reacting a lot more to salicylates now, I have severe, severe headaches, neck pain, insomnia and dizziness. I also have difficulty with eye tracking and focusing. I had this symptom in the past, too.
I read an account of someone else experiencing something similar, and specifically with methylation supplements. I feel there must be something to it? I'm just not sure what to do now. The other trend with all three cases is that I went through a period of a high oxalate diet, followed by reducing too quickly. All three times I've wondered if it's oxalate dumping or the methylation supps. The thiamine could ALSO be inducing oxalate dumping. The last two times this happened, I went back to a high oxalate diet - not sure if that helped or if it was other factors (other supplements, of which there were plenty, changing location, who knows). I also took SAMe at the time.
What gives me a bit of hope is that I've experienced this in the past and it somehow resolved and I went into remission or mild...although not for very long periods of time. I have so much energy now, but this is worse because I feel so dizzy and strange that I don't even know how I'm writing this. Most of all, I feel "strange" and out of it. It feels like my ears are blocked or my head is somehow blocked.
Still thinking about bipolar, too. I don't think that my symptoms correlate that well, although could look similar to rapid cycling Bipolar II, along with other symptoms. I think that the two constellations are Bipolar II, autism, MCAS, MCS, plus strange neurological symptoms OR chronic fatigue, muscle pain/fibro symptoms (originally diagnosed with this) and PEM from minimal exertion. There must be an explanation...Oh and POTS symptoms have also magically vanished now! Overall, though, I think I feel less functional, because I can run around the house now but can't really think straight. Another thought about the blocked ears feeling is that I used new earplugs last night and when I took them out, it felt like I could have pushed ear wax too far down - not sure if this makes sense. Obviously this wouldn't explain the shift in all other symptoms, haha, but when I had this rotation in symptoms in 2017, I had the same sensation and then ended up with impacted ears again and again, which baffled doctors. Then it all just stopped happening with the ears..Most of all, it feels like I'm on an airplane. It also feels like I have tension in my tongue and like I just need to relax it, somehow. The more I think about it, the more I think it's related to the methylation block..
I've wondered about trialing keto (ketovore version) again soon (last year I lasted a month) because of the connection with bipolar. Not sure..
Do I just stop supplements and keep waiting for this to subside, and then if fatigue worsens I start a methylation or thiamine protocol very, very slowly? Hmm.
Thanks a lot!
Well, it's happening yet again - my symptoms have completely shifted. This happened in 2007, then 2017, then 2020 and more recently, a week ago. When it happened in 2017, I speculated that it was due to starting a methylated B complex. I developed mostly neurological symptoms and reactions to food, IBS, sensory issues, etc. I somehow improved significantly/was in remission for a few years, but have no idea how because I took hundreds of supplements/herbs (what was I thinking) and also rested a lot.
In 2020 I'm also pretty sure that I shifted symptoms when I started changing supplements non-stop. I also introduced B1 (including TTFD form) and I'm quite sure that caused things to shift - I had severe insomnia, muscle tension, anxiety, weird symptoms and reactions, IBS, but no fatigue and no PEM! I also thought I could be oxalate dumping, since I changed my diet drastically and it was previously high oxalate for some time.
Somehow, it more or less improved - again, I tried so many things and I also ended up spending time in a different climate (hot and humid), but I continued with the B1 for several months. I had no fatigue. I then ended up in a different country (dry arid, high altitude) and lost access to the TTFD and some other supplements. I ended up fatigued, but also very depressed. In fact, I went from such a high in the hot, sunny place to such a low state in the other place (it was winter), that I also suspected Bipolar, but I had plenty of other symptoms. Thinking about it now, I was depressed and also crying a lot (but mostly during luteal phase - PMDD) in 2017, in the lead up to the methylation supps and sudden shift in symptoms.
I started a B complex a week ago - non-methylated folate as folinic acid, other Bs, only 15mg TTFD and 50mg Befothiamine (first time taking it). I also started the transdermal B12 oils. I guess I should have gone more slowly. For some reason, I also added NAC for a few days. Well, something shifted and the extreme fatigue and muscle pain and weakness shifted to IBS symptoms and other symptoms, as usual! I stopped the B supplements (apart from the B12 oils) a couple of days ago and the IBS immediately stopped, but I am reacting a lot more to salicylates now, I have severe, severe headaches, neck pain, insomnia and dizziness. I also have difficulty with eye tracking and focusing. I had this symptom in the past, too.
I read an account of someone else experiencing something similar, and specifically with methylation supplements. I feel there must be something to it? I'm just not sure what to do now. The other trend with all three cases is that I went through a period of a high oxalate diet, followed by reducing too quickly. All three times I've wondered if it's oxalate dumping or the methylation supps. The thiamine could ALSO be inducing oxalate dumping. The last two times this happened, I went back to a high oxalate diet - not sure if that helped or if it was other factors (other supplements, of which there were plenty, changing location, who knows). I also took SAMe at the time.
What gives me a bit of hope is that I've experienced this in the past and it somehow resolved and I went into remission or mild...although not for very long periods of time. I have so much energy now, but this is worse because I feel so dizzy and strange that I don't even know how I'm writing this. Most of all, I feel "strange" and out of it. It feels like my ears are blocked or my head is somehow blocked.
Still thinking about bipolar, too. I don't think that my symptoms correlate that well, although could look similar to rapid cycling Bipolar II, along with other symptoms. I think that the two constellations are Bipolar II, autism, MCAS, MCS, plus strange neurological symptoms OR chronic fatigue, muscle pain/fibro symptoms (originally diagnosed with this) and PEM from minimal exertion. There must be an explanation...Oh and POTS symptoms have also magically vanished now! Overall, though, I think I feel less functional, because I can run around the house now but can't really think straight. Another thought about the blocked ears feeling is that I used new earplugs last night and when I took them out, it felt like I could have pushed ear wax too far down - not sure if this makes sense. Obviously this wouldn't explain the shift in all other symptoms, haha, but when I had this rotation in symptoms in 2017, I had the same sensation and then ended up with impacted ears again and again, which baffled doctors. Then it all just stopped happening with the ears..Most of all, it feels like I'm on an airplane. It also feels like I have tension in my tongue and like I just need to relax it, somehow. The more I think about it, the more I think it's related to the methylation block..
I've wondered about trialing keto (ketovore version) again soon (last year I lasted a month) because of the connection with bipolar. Not sure..
Do I just stop supplements and keep waiting for this to subside, and then if fatigue worsens I start a methylation or thiamine protocol very, very slowly? Hmm.
Thanks a lot!