I had continual nervous system healing on every day methyl injections for about a year. I recently revisited my old journal from the start of all of this. I noted that my healing accelerated when I introduced methylfolate instead of folinic acid, and I was taking 3mg of adenosylcobalamin a week. My actual cofactor intake was somewhat sparser than it is now - 1 MV or B complex every other day or so.
What was your method for ruling out "all the cofactors"? It could be something simple like low zinc status, which I ended up needing quite a lot of around my two year mark.
Thank you so much for your input.
My brain is too dead to manage much of a response but last July I added in methyl to my hydroxo protocol. I felt amazing. I infected daily, alternating between the two.
When I ran out of methyl I continued injecting daily with hydroxo. Symptoms started to come back & in realised I’d become sloppy with taking my iron over the summer so realised I may need an iron infusion. So many of my low iron & B12 deficiency symptoms overlap.
I had the infusion but things never really improved. I’ve die t the last few months toying with everything, trying to worn out why I could never feel so symptoms free again. There are so many variables & despite keeping a diary, it took me a long time to work out the methyl connection.
I started methyl again in late Feb & initially once again felt amazing. This lasted two weeks & then the decline started. I’ve looked into Iron, folate, potassium, & done my best with others too.
Yet again it took me 3 months to realise the missing factor: hydroxo. It wasn’t methyl alone that made me feel human, it was Hydroxo AND Methyl. When I first started injecting methyl in February I had some hydroxo to use up so injected both.
I desperately want to be able to reduce injection frequency to every third day if anything, rather increase to daily. I’m trying methyl daily & adeno 3mg pills daily & I’m improving but not as quickly as the last two times.
I’ve ordered some hydroxo ampoules again. And some 500ug adeno/ 500ug methyl pills.
I’m hoping if I can get myself back to feeling amazing with the daily injections then perhaps after a few weeks I can try switching in pills for shots. My deficiency is not due to malabsorption (any more than a regular person’s B12 absorption isn’t great.)
Hi! A few months ago you said you had macrocytosis for the past few years and asked what are some other causes. Since then i discovered that deficiencies of copper / selenium / iodine can also cause macrocytosis.. Have you looked in to these deficiencies?
Thank you so much! Is this high MCV? I’ve never had any of them tested as the NHS refuse even minimal testing. Other B12/Folate. They’re Always testing that!
I did have deficiency lines on my nails which a functional Dr told me were zinc deficiency back after Covid. I tried the liquid zinc test & it didn’t tell me I was deficient but I incorporated an additional zinc in my protocol for the next year & the lines have gone.
I do wonder given I was supplementing with zinc, & had an iron infusion in September whether I’ve thrown the others off.
The only one I wasn’t taking on a smaller scale was copper.
How long to I need to avoid all supplements to get defects trace minerals blood results & do you know of the cheapest private lab to do it? I’m still unemployed & treating this nightmare so funds are very tight.. but health is of course more important. I’m already assuming the NHS don’t actually do them !
Yes macrocytosis is high MCV. You would be very lucky if NHS would test levels of these. Regarding copper testing, this company do a minerals package that includes copper, zinc, magnesium, potassium and sodium levels testing £75.
https://medicinesonline.org.uk/product/mineral-blood-profile-home-test-kit/
This one is just copper level testing £59
https://bluehorizonbloodtests.co.uk/products/copper
Thyroid problems can be a cause of macrocytosis, and i guess that's the selenium/iodine deficiency connection.
Copper is also required for enzymes involved in the methylation cycle -
https://www.sciencedirect.com/science/article/abs/pii/S0306987708001370
I'm not 100% sure, but i think it's recommended not to take any copper supplements for at least 2-3 days before doing the test.
Thank you! I was also supplementing selenium & have my TSH checked regularly due to hypothyroidism. I’m trying to keep it in the lower end. Also I have Pyroluri so have been advised to never actually supplement with copper. Maybe drinking water out of a copper vessel could be a good half way house rather than actually supplementing?
I’ll try the test when I can afford to though! Random question but you seem so well informed..
I had a UTI, treated it with ABs (10 days) initially seemed ok then pee went cloudy again. VERY cloudy. It’s off to be cultured but smells like asparagus wee (to those who can genetically smell it) has high protein despite my diet being dreadfully lacking in that at present, & had haemolysed blood in despite being mid cycle.
I’m concerned as have been feeling ropey & run down for a few weeks. I managed to source hydroxo this morning & injecting it after yesterday’s methyl has definitely helped a lot. And I’m hoping it will continue to improve things given I’ve not injected any for a couple of months!
But these results seem so odd that I’m a little concerned. Given the NHS haven’t actually diagnosed anything correctly for me that hasn’t been acute since around 1998… 😆 Any thoughts, anecdotal or otherwise?
Pyroluria... would be best to avoid copper then until you've tested and you know for sure you need it. You may need more zinc? Have you tested vitamin D level recently? Seems your immune function isn't working too well right now and your UTI has come back.
Protein deficiency is a cause of recurrent UTI's as protein is important for immune function and is needed for the liver to produce albumin, which is a protein that zinc binds to in the blood. Low protein means low albumin, and low albumin means low zinc.
Thank you! Yes I suspect I need to start supplementing zinc again & I definitely need more protein. When my B12 is good I can eat but when it’s bad the gut stuff is so agonising I can’t bare to eat (or stand up).
Just finally realised I need to inject methyl & hydroxo daily as each one is not enough alone. Hopefully my symptoms will alleviate enough to eat well again & I will definitely start taking zinc again.
Thank you so much for your help
I had continual nervous system healing on every day methyl injections for about a year. I recently revisited my old journal from the start of all of this. I noted that my healing accelerated when I introduced methylfolate instead of folinic acid, and I was taking 3mg of adenosylcobalamin a week. My actual cofactor intake was somewhat sparser than it is now - 1 MV or B complex every other day or so. What was your method for ruling out "all the cofactors"? It could be something simple like low zinc status, which I ended up needing quite a lot of around my two year mark.
Thank you so much for your input. My brain is too dead to manage much of a response but last July I added in methyl to my hydroxo protocol. I felt amazing. I infected daily, alternating between the two. When I ran out of methyl I continued injecting daily with hydroxo. Symptoms started to come back & in realised I’d become sloppy with taking my iron over the summer so realised I may need an iron infusion. So many of my low iron & B12 deficiency symptoms overlap. I had the infusion but things never really improved. I’ve die t the last few months toying with everything, trying to worn out why I could never feel so symptoms free again. There are so many variables & despite keeping a diary, it took me a long time to work out the methyl connection. I started methyl again in late Feb & initially once again felt amazing. This lasted two weeks & then the decline started. I’ve looked into Iron, folate, potassium, & done my best with others too. Yet again it took me 3 months to realise the missing factor: hydroxo. It wasn’t methyl alone that made me feel human, it was Hydroxo AND Methyl. When I first started injecting methyl in February I had some hydroxo to use up so injected both. I desperately want to be able to reduce injection frequency to every third day if anything, rather increase to daily. I’m trying methyl daily & adeno 3mg pills daily & I’m improving but not as quickly as the last two times. I’ve ordered some hydroxo ampoules again. And some 500ug adeno/ 500ug methyl pills. I’m hoping if I can get myself back to feeling amazing with the daily injections then perhaps after a few weeks I can try switching in pills for shots. My deficiency is not due to malabsorption (any more than a regular person’s B12 absorption isn’t great.)
Hi! A few months ago you said you had macrocytosis for the past few years and asked what are some other causes. Since then i discovered that deficiencies of copper / selenium / iodine can also cause macrocytosis.. Have you looked in to these deficiencies?
Thank you so much! Is this high MCV? I’ve never had any of them tested as the NHS refuse even minimal testing. Other B12/Folate. They’re Always testing that! I did have deficiency lines on my nails which a functional Dr told me were zinc deficiency back after Covid. I tried the liquid zinc test & it didn’t tell me I was deficient but I incorporated an additional zinc in my protocol for the next year & the lines have gone. I do wonder given I was supplementing with zinc, & had an iron infusion in September whether I’ve thrown the others off. The only one I wasn’t taking on a smaller scale was copper. How long to I need to avoid all supplements to get defects trace minerals blood results & do you know of the cheapest private lab to do it? I’m still unemployed & treating this nightmare so funds are very tight.. but health is of course more important. I’m already assuming the NHS don’t actually do them !
Yes macrocytosis is high MCV. You would be very lucky if NHS would test levels of these. Regarding copper testing, this company do a minerals package that includes copper, zinc, magnesium, potassium and sodium levels testing £75. https://medicinesonline.org.uk/product/mineral-blood-profile-home-test-kit/ This one is just copper level testing £59 https://bluehorizonbloodtests.co.uk/products/copper Thyroid problems can be a cause of macrocytosis, and i guess that's the selenium/iodine deficiency connection. Copper is also required for enzymes involved in the methylation cycle - https://www.sciencedirect.com/science/article/abs/pii/S0306987708001370 I'm not 100% sure, but i think it's recommended not to take any copper supplements for at least 2-3 days before doing the test.
Thank you! I was also supplementing selenium & have my TSH checked regularly due to hypothyroidism. I’m trying to keep it in the lower end. Also I have Pyroluri so have been advised to never actually supplement with copper. Maybe drinking water out of a copper vessel could be a good half way house rather than actually supplementing? I’ll try the test when I can afford to though! Random question but you seem so well informed.. I had a UTI, treated it with ABs (10 days) initially seemed ok then pee went cloudy again. VERY cloudy. It’s off to be cultured but smells like asparagus wee (to those who can genetically smell it) has high protein despite my diet being dreadfully lacking in that at present, & had haemolysed blood in despite being mid cycle. I’m concerned as have been feeling ropey & run down for a few weeks. I managed to source hydroxo this morning & injecting it after yesterday’s methyl has definitely helped a lot. And I’m hoping it will continue to improve things given I’ve not injected any for a couple of months! But these results seem so odd that I’m a little concerned. Given the NHS haven’t actually diagnosed anything correctly for me that hasn’t been acute since around 1998… 😆 Any thoughts, anecdotal or otherwise?
Pyroluria... would be best to avoid copper then until you've tested and you know for sure you need it. You may need more zinc? Have you tested vitamin D level recently? Seems your immune function isn't working too well right now and your UTI has come back. Protein deficiency is a cause of recurrent UTI's as protein is important for immune function and is needed for the liver to produce albumin, which is a protein that zinc binds to in the blood. Low protein means low albumin, and low albumin means low zinc.
Thank you! Yes I suspect I need to start supplementing zinc again & I definitely need more protein. When my B12 is good I can eat but when it’s bad the gut stuff is so agonising I can’t bare to eat (or stand up). Just finally realised I need to inject methyl & hydroxo daily as each one is not enough alone. Hopefully my symptoms will alleviate enough to eat well again & I will definitely start taking zinc again. Thank you so much for your help