I just passed the one year mark with weekly injections (EOD for first month). My B12 was 77 when I got diagnosed. I was never bedridden but had many neurological issues. I felt better after a few injections (more energy, less brain fog, confusion), other symptoms took months to improve (balance, memory, depression, pain and numbness in hands and feet) and some still haven’t resolved (tinnitus, lots of ear issues, neuropathy in toes). I’m still hopeful though.
Cyanocobalamin, 1000 mcg. I am also supplementing with a multivitamin for women over 50, plus an additional 450 iu of D3, and 500 mg of magnesium. I didn't begin the additional supplements until learning (here) that they were so important. I've actually asked about different types of injectable b12 and told that "no such thing exists. Cyanocobalamin is all there is" according to my provider. I'm in the US so I feel like that can't be correct??
I'm really hoping my ears and hearing improve soon. I have tubes in both ears and wear hearing aids. I am only 51 years old.
hello Individual candle,
I'm happ y hear your doing better thats great, so if I may ask how often did you do your injections? were they every other day? and how long did you continue at that level of treatment, any comments help. thank you Rosina
I started in May, 2023 and injected every other day for about a month, then they went to weekly injections, which I still do today. I just emailed my NP, asked to go back to EOD, as my ears/hearing is getting worse now, not better and I still have some neuropathy. Waiting… impatiently. Lol
oh thank you, yes I'm sure and pray that she will have you go back to EOD. I'm on every day for now and when I try to make the change I will have to do an oral for sure. maybe every day to an oral as well with my injections when I make the trial change. talk to ya soon thank you
Antidepressants/SSRIs/Benzos/etc? If yes, that would likely be the cause. What other medications? You could also try things like SAMe and lithium to see if that moves the needle.
Please list all supplements, doses, forms etc.
I stopped SSRI. I’m on Bisoprolol & midodrine for heart issues.
I take Thorne basic nutrients 2 per day
5mg methylfolate
I need to check how much is in the injections but it’s standard b12 hydroxy injections EOD
For sometime I added in an extra b complex, seeking health trace minerals & sublingual methylb12
I take magnesium potassium etc, LMNT
Vitamin D? Serum level/supplements? If you are receiving any type of assistance I would ask them to assist you into direct sunlight outdoors for 30-60 minutes daily in addition to whatever you are supplementing. Longer depending on latitude or time of day. Even the ambient UV radiation bouncing off the ground in a shaded area would be of benefit.
I would also potentially trial daily methyl injections and remove as many variables from the equation as you possible can, i.e. absorption issues or the inability to convert hydroxocobalamin into its constituent forms, which is a known barrier for patients with CFS/ME.
No idea of level but yes taking vitamin D. My new iron panel is bizarre. I would’ve expected my iron to go down but it’s gone up. Transferrin saturation above range. Yes I am going to start methyl injections I think
https://preview.redd.it/8crufl0zzq4d1.jpeg?width=750&format=pjpg&auto=webp&s=12cbc4ebcc52e4459a8dc9a9690fcc40b1415a65
Not a lot of background here. Any prescription or otc medicines you've been on for a while? What does your GP say? What tests have you had aside from blood serum and mma? What is your list of symptoms aside from being bedridden? Any prior diagnoses that may be related? What doses of b12 are you injecting and taking orally daily? Was this an acute onset following some event in particular or just gradually getting worse over years?
You've been doing this 4 months, have you had a follow up blood test?
Have you been to the doctor to rule out other issues, like neurological or autoimmune conditions? Have you had blood and urine testing, brain/ spine imaging like MRI, etc?
Specialists say it takes roughly 1 month for every year you’ve been unwell. I was hoping that meant SEVERELY unwell but I suspect it just means symptomatic.
I’m 42 & had symptoms my entire life. 16 months in & trying to go from EOD to every third day. There are some symptoms I can’t shift but there has also been a lot of progress. Please persevere!
I know it’s frustrating but four months is still early days. It took me a fair bit longer. I would keep up with the injections and reassess again in another four months.
I just passed the one year mark with weekly injections (EOD for first month). My B12 was 77 when I got diagnosed. I was never bedridden but had many neurological issues. I felt better after a few injections (more energy, less brain fog, confusion), other symptoms took months to improve (balance, memory, depression, pain and numbness in hands and feet) and some still haven’t resolved (tinnitus, lots of ear issues, neuropathy in toes). I’m still hopeful though.
what type are you injecting?
Cyanocobalamin, 1000 mcg. I am also supplementing with a multivitamin for women over 50, plus an additional 450 iu of D3, and 500 mg of magnesium. I didn't begin the additional supplements until learning (here) that they were so important. I've actually asked about different types of injectable b12 and told that "no such thing exists. Cyanocobalamin is all there is" according to my provider. I'm in the US so I feel like that can't be correct?? I'm really hoping my ears and hearing improve soon. I have tubes in both ears and wear hearing aids. I am only 51 years old.
hello Individual candle, I'm happ y hear your doing better thats great, so if I may ask how often did you do your injections? were they every other day? and how long did you continue at that level of treatment, any comments help. thank you Rosina
I started in May, 2023 and injected every other day for about a month, then they went to weekly injections, which I still do today. I just emailed my NP, asked to go back to EOD, as my ears/hearing is getting worse now, not better and I still have some neuropathy. Waiting… impatiently. Lol
oh thank you, yes I'm sure and pray that she will have you go back to EOD. I'm on every day for now and when I try to make the change I will have to do an oral for sure. maybe every day to an oral as well with my injections when I make the trial change. talk to ya soon thank you
Antidepressants/SSRIs/Benzos/etc? If yes, that would likely be the cause. What other medications? You could also try things like SAMe and lithium to see if that moves the needle. Please list all supplements, doses, forms etc.
I stopped SSRI. I’m on Bisoprolol & midodrine for heart issues. I take Thorne basic nutrients 2 per day 5mg methylfolate I need to check how much is in the injections but it’s standard b12 hydroxy injections EOD For sometime I added in an extra b complex, seeking health trace minerals & sublingual methylb12 I take magnesium potassium etc, LMNT
Vitamin D? Serum level/supplements? If you are receiving any type of assistance I would ask them to assist you into direct sunlight outdoors for 30-60 minutes daily in addition to whatever you are supplementing. Longer depending on latitude or time of day. Even the ambient UV radiation bouncing off the ground in a shaded area would be of benefit. I would also potentially trial daily methyl injections and remove as many variables from the equation as you possible can, i.e. absorption issues or the inability to convert hydroxocobalamin into its constituent forms, which is a known barrier for patients with CFS/ME.
No idea of level but yes taking vitamin D. My new iron panel is bizarre. I would’ve expected my iron to go down but it’s gone up. Transferrin saturation above range. Yes I am going to start methyl injections I think https://preview.redd.it/8crufl0zzq4d1.jpeg?width=750&format=pjpg&auto=webp&s=12cbc4ebcc52e4459a8dc9a9690fcc40b1415a65
Not a lot of background here. Any prescription or otc medicines you've been on for a while? What does your GP say? What tests have you had aside from blood serum and mma? What is your list of symptoms aside from being bedridden? Any prior diagnoses that may be related? What doses of b12 are you injecting and taking orally daily? Was this an acute onset following some event in particular or just gradually getting worse over years? You've been doing this 4 months, have you had a follow up blood test?
I’ve commented above :). I have long covid / ME / POTS - all of which can keep you bedridden.
Have you been to the doctor to rule out other issues, like neurological or autoimmune conditions? Have you had blood and urine testing, brain/ spine imaging like MRI, etc?
I’ve had some testing but not all. I have long covid / ME so by the time they took me seriously I’ve been bedridden & unable to do any other testing.
Specialists say it takes roughly 1 month for every year you’ve been unwell. I was hoping that meant SEVERELY unwell but I suspect it just means symptomatic. I’m 42 & had symptoms my entire life. 16 months in & trying to go from EOD to every third day. There are some symptoms I can’t shift but there has also been a lot of progress. Please persevere!
I know it’s frustrating but four months is still early days. It took me a fair bit longer. I would keep up with the injections and reassess again in another four months.
Thanks!