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Hi all,
I hope this is the right section where to post is, if it isn't feel free to move it, or I'll edit/delete.
I've been having issues with autoimmune disorders (psoriasis and prostatic arthritis) and lower energy since 2007, but it's been since late 2011 that things started to get really bad, starting with fatigue, depression, in 2012 the fatigue got quite extreme, then in 2013 IBS, and in 2014 I also started having panic attacks, nausea, headaches, got diagnosed with pre-diabetes, vasovagal issues (fluctuation of BP, dizziness, BP drops when I try to work out) worsening of memory, brain fog, very frequent urination (no matter how much I drink I'm dehydrated in the morning because I pee during the night, even during the day as soon as I drink I start peeling like crazy like my body doesn't want to retain water).
Over the last four years I tried so many things, too many to write in a post, but theone thing they all have in common is that nothing worked, or if they worked, they worked for a brief period of time, just to go back to normal afterwards.
Since the beginning of the year I've been focusing on methylation and genetic mutations, and since Nov 2014 I've been eating a low carb/high(good)fat/high protein diet to help with the pre-diabetes, which seemed to have reduced the frequency of panic attacks (I though it was because wild fluctuations of glucose were linked to release of adrenaline case of reactive hypoglycemia).
My genetic test shows that I'm homozygous for
- MTHFR A1298C, MTRR A66G, MAO A R297R
And heterozygous for
- CBS A360A, COMT V158M, COMT H62H, VDR Bsm, VDR TAQ, BHMT 08
I've been reading like crazy and tried to make sense of all this, and I decided that I would start with the Yasko simplified protocol to address glutamate/GABA imbalance and the CBS mutation, then support the shortcut methylation through the BHMT, then switch to Ben Lynch's protocol for the methylation proper.
I also run a bunch of tests, as much as my finances would allow, before starting the protocol:
- CMP doesn't show anything out of the ordinary
- homocysteine (tested properly) is 8 so normal
- ammonia is 19, normal
- the essential elements test showed low levels of trace minerals, especially lithium (started supplementing trace minerals and lithium right after)
- the amino acids urine test showed everything low but I'm pretty sure it's biased, because I was very dehydrated so the creatinine ration is not normal
I started with cutting down sulphur and possible glutamate sources from my diet in January, then in Febrary I started the phase 1 from Yasko protocol (can post which supplements if necessary) and after a week I started feeling better, had more energy, doing work was not as excruciating as usual, mood was better, libido was higher, etc. Usually when I feel better from something I try it only lasts a day or two, but this lasted a whole month. On the other hand I was peeing more than usual, especially at night, so my sleep was even worse than usual.
After a month of that, I started feeling a bit worse, my knee arthritis flared up, had less energy, but I thought it was just a temporary bump on the road. Shortly after that I started the phase 2, with the phosphatidylserine, etc, to stimulate the shortcut methylation through the BHMT. After starting this, I started having panic attacks again, and low BP issues, which prevents me from working out at the gym (if it's already low, when I work out it gets even lower and I get dizzy and then get a panic attack. I've seen a cardiologist and nothing is wrong with my hearth, he thinks it's a vagal nerve issue). I then stopped the BHMT protocol, since I read it can result in higher adrenaline/dopamine ratio, and having a COMT mutation I'm probably more sensitive to that; after a few days I started the Ben Lynch protocol.
So now it's been 3 weeks that I've been doing the Ben Lynch protocol. I started with just methyl B12, started really low and worked my way up to 4000 mcg. I stopped all the other supplements for the first week, then I reintroduced the trace minerals, milk thistle, magnesium and potassium and adenosyl B12.
Besides the first day with adenosyl B12 I haven't noticed any improvement whatsoever and I'm pretty much at the same point I was before I started the Yasko phase 1 in February: I have some really bad days with extreme fatigue, nausea, headaches, diarrhea, anxiety and panic attacks. Then other days I'm more functional, but I'm still always quite tired and I get exhausted from doing small things. My BP is still fairly low, and I have a hard time working out even a little (which I really need to keep my pre-diabetes in check). The panic attacks come and go.
Now I'm at the point where I think I loaded up with enough methyl B12 that I can switch to the B12 with methylfolate, again starting very low and working my way up.
One thing though I discovered in the past few weeks is that the Vitamin D test I performed came up with abnormal results: my Vitamin D 25-hydroxy is 20 (very low) and my Vitamin D 1,25-dihydroxy is 75 (too high). The interesting thing is that I haven't mentioned that my wife suffers from symptoms very similar to mine (she also has mutations and she's going through the same tests and protocols I'm doing), and she also has the Vit D 25 low and Vit 1,25 high.
This could explain why we both had some elevated calcium in the past few years, but normal PTH. Also Yasko's phase1 supplements contained some Vit D, and we stopped peeing so much after stopping the supplements, so I wonder if it was related.
The only thing I could find aboUt this Vit D anomaly is that shows inflammation and is not uncommon in autoimmune patients. As far as the cause I read it can be caused by chronic infections, like sarcoidosis, but also possibly by Lyme and other less known chronic viral/bacterial infections.
I'm planning to get to optimal levels of methyl B12 and methylfolate, since the methylation is connected to the immune system, but then I have no idea what to do, especially since it seems like it's not making me feel any better and there is probably some other underlying problem.
I would be really really grateful if anybody with experience with this, could give me some advise on how to proceed, because after all these years of researching, reading, and trying things, I feel like I'm more confused than ever...
Thanks!!!
I hope this is the right section where to post is, if it isn't feel free to move it, or I'll edit/delete.
I've been having issues with autoimmune disorders (psoriasis and prostatic arthritis) and lower energy since 2007, but it's been since late 2011 that things started to get really bad, starting with fatigue, depression, in 2012 the fatigue got quite extreme, then in 2013 IBS, and in 2014 I also started having panic attacks, nausea, headaches, got diagnosed with pre-diabetes, vasovagal issues (fluctuation of BP, dizziness, BP drops when I try to work out) worsening of memory, brain fog, very frequent urination (no matter how much I drink I'm dehydrated in the morning because I pee during the night, even during the day as soon as I drink I start peeling like crazy like my body doesn't want to retain water).
Over the last four years I tried so many things, too many to write in a post, but theone thing they all have in common is that nothing worked, or if they worked, they worked for a brief period of time, just to go back to normal afterwards.
Since the beginning of the year I've been focusing on methylation and genetic mutations, and since Nov 2014 I've been eating a low carb/high(good)fat/high protein diet to help with the pre-diabetes, which seemed to have reduced the frequency of panic attacks (I though it was because wild fluctuations of glucose were linked to release of adrenaline case of reactive hypoglycemia).
My genetic test shows that I'm homozygous for
- MTHFR A1298C, MTRR A66G, MAO A R297R
And heterozygous for
- CBS A360A, COMT V158M, COMT H62H, VDR Bsm, VDR TAQ, BHMT 08
I've been reading like crazy and tried to make sense of all this, and I decided that I would start with the Yasko simplified protocol to address glutamate/GABA imbalance and the CBS mutation, then support the shortcut methylation through the BHMT, then switch to Ben Lynch's protocol for the methylation proper.
I also run a bunch of tests, as much as my finances would allow, before starting the protocol:
- CMP doesn't show anything out of the ordinary
- homocysteine (tested properly) is 8 so normal
- ammonia is 19, normal
- the essential elements test showed low levels of trace minerals, especially lithium (started supplementing trace minerals and lithium right after)
- the amino acids urine test showed everything low but I'm pretty sure it's biased, because I was very dehydrated so the creatinine ration is not normal
I started with cutting down sulphur and possible glutamate sources from my diet in January, then in Febrary I started the phase 1 from Yasko protocol (can post which supplements if necessary) and after a week I started feeling better, had more energy, doing work was not as excruciating as usual, mood was better, libido was higher, etc. Usually when I feel better from something I try it only lasts a day or two, but this lasted a whole month. On the other hand I was peeing more than usual, especially at night, so my sleep was even worse than usual.
After a month of that, I started feeling a bit worse, my knee arthritis flared up, had less energy, but I thought it was just a temporary bump on the road. Shortly after that I started the phase 2, with the phosphatidylserine, etc, to stimulate the shortcut methylation through the BHMT. After starting this, I started having panic attacks again, and low BP issues, which prevents me from working out at the gym (if it's already low, when I work out it gets even lower and I get dizzy and then get a panic attack. I've seen a cardiologist and nothing is wrong with my hearth, he thinks it's a vagal nerve issue). I then stopped the BHMT protocol, since I read it can result in higher adrenaline/dopamine ratio, and having a COMT mutation I'm probably more sensitive to that; after a few days I started the Ben Lynch protocol.
So now it's been 3 weeks that I've been doing the Ben Lynch protocol. I started with just methyl B12, started really low and worked my way up to 4000 mcg. I stopped all the other supplements for the first week, then I reintroduced the trace minerals, milk thistle, magnesium and potassium and adenosyl B12.
Besides the first day with adenosyl B12 I haven't noticed any improvement whatsoever and I'm pretty much at the same point I was before I started the Yasko phase 1 in February: I have some really bad days with extreme fatigue, nausea, headaches, diarrhea, anxiety and panic attacks. Then other days I'm more functional, but I'm still always quite tired and I get exhausted from doing small things. My BP is still fairly low, and I have a hard time working out even a little (which I really need to keep my pre-diabetes in check). The panic attacks come and go.
Now I'm at the point where I think I loaded up with enough methyl B12 that I can switch to the B12 with methylfolate, again starting very low and working my way up.
One thing though I discovered in the past few weeks is that the Vitamin D test I performed came up with abnormal results: my Vitamin D 25-hydroxy is 20 (very low) and my Vitamin D 1,25-dihydroxy is 75 (too high). The interesting thing is that I haven't mentioned that my wife suffers from symptoms very similar to mine (she also has mutations and she's going through the same tests and protocols I'm doing), and she also has the Vit D 25 low and Vit 1,25 high.
This could explain why we both had some elevated calcium in the past few years, but normal PTH. Also Yasko's phase1 supplements contained some Vit D, and we stopped peeing so much after stopping the supplements, so I wonder if it was related.
The only thing I could find aboUt this Vit D anomaly is that shows inflammation and is not uncommon in autoimmune patients. As far as the cause I read it can be caused by chronic infections, like sarcoidosis, but also possibly by Lyme and other less known chronic viral/bacterial infections.
I'm planning to get to optimal levels of methyl B12 and methylfolate, since the methylation is connected to the immune system, but then I have no idea what to do, especially since it seems like it's not making me feel any better and there is probably some other underlying problem.
I would be really really grateful if anybody with experience with this, could give me some advise on how to proceed, because after all these years of researching, reading, and trying things, I feel like I'm more confused than ever...
Thanks!!!
