Struggling

[Chickens44]

So started SI EOD nearly five months ago, following iron infusion. Plus folic 5mg every day. Started correct level of Vitamin D + K about six weeks ago. Dropped folic to twice a week and added in b complex. Iron, ferritin, folate levels all okay. Didn’t add magnesium but started 5 days ago. Also drinking lots of OJ with coconut water.

Last two weeks I’ve got so much worse. Shaking, weak, tinnitus worse, feel heavy, heart thumping, nausea is back, so lost my appetite again. I was functioning before, but now can barely get out of bed, if I do it’s to lie on the sofa. Four weeks ago I drove 3 hours to Dorset for a weeks holiday, didn’t feel great but did it.

People say, don’t stop, look how far you’ve come. But to be honest I’ve seen no major improvements in any symptoms so far, I’ve been waiting….

Is it just low magnesium still, or just reversing out. Also had Covid and flu jabs two weeks ago. How long does it take to get magnesium levels back up?

I feel I’m not going anywhere, except down 😔

[JesusMercy60]

Hello Chickens44,

I feel you, since last week maybe it started on Wed. I was feeling worse again, the week before I was feeling way better and getting out more, I was not at all normal but I was better. I even went also out 3 hours with Hubby to a wedding. after a few days or 4 days I went down hill. I think I was doing too much and my body said STOP. I'm think so , yesterday was a little better at times but not the whole day. and this am I struggled through Mass and for a bit I feel better. I'm going to lay down a whole lot again today. I really feel my brain doing way more work as well. I need to lay down more and give my body the rest it is trying to do. I felt all out of wack these days.

[Technoid]

Why so much orange juice? A small glass at at breakfast is fine but don't go overboard, likewise with the coconut water. There are better ways to get both vitamin C and Potassium.

[Chickens44 in reply to Technoid]

Because if I have low magnesium I thought bit went hand in hand with low potassium and calcium.

[Technoid in reply to Chickens44]

Too much of one thing is never a great idea. Things like orange juice and coconut water should be a complement to an overall balanced diet, not something to focus on drinking large quantities of - that could upset digestion and imbalance your gut microbiome. Better to focus on a variety of different foods in reasonable proportions.

[B12life in reply to Chickens44]

I agree with Technoid on the OJ, my concern is the amount of sugar intake. Too much sugar can make one tired. I'm not saying that's primary cause, but I would be very cautious about sugar intake. keep sugar to a minimum in any form (fruits, juices, etc. it all adds up)

[DiSews]

I am sorry to hear that you are struggling again. A long drive and a week away sound lovely, but you have possibly just done too much for your body to keep up with. And then vaccines on top of that may have knocked you a bit as well. It is so difficult to submit to the rest required to get through this reversing out period. At about 5 months of SI EOD I had a similar flare of symptoms (not the tinnitus) and I went to daily injections which got me through the subsequent 3 months. That and lots of rest. Lots and lots and lots of rest. As you have since had normal bloods, I would be inclined to say this your body recovering. Keep recording your symptoms daily. You will eventually see improvements, as I and many others have. Slowly but surely.

Big hugs 🫂

[Chickens44 in reply to DiSews]

Thanks, what symptoms did you get, if you don’t mind me asking. I’m just over 4 half months in. Not sure about doing daily injections, as I’m feeling so rotten I’m scared to add anything else into the mix with all the other stuff I’m taking, and it’s so confusing whose advice to follow with regard to cofactors. It’s all good advice I know, but it differs between each group and person.

[DiSews in reply to Chickens44]

My daily lucky dip of symptoms had eased in severity but then increased again, as well as having upset gut, extreme racing heart and shortness of breath, with debilitating fatigue. 3 km was too far to walk, and I can still only manage 3 walks a week, if I keep them all short ( pre- crash/ SI/ reversing out I was walking about 30 km most weeks) . Also some tremors, brain fog, aphasia and loss of balance if I didn't rest enough. All of this has eased significantly now, but not gone away completely, and I still have days that I have to be prepared to just sit. ( heart is fine, lung specialist next week) I balked at daily injections, but then realised the worst that could happen is that I pee out more B12, and for me it has been worth it! I have tried every 36 hrs as well ( it doesn't have to be in 24 hour increments) and sometimes that was enough. I am still mostly on daily injections.

Co factors are a minefield. My ferretin sats are high, giving my GP a headache. I only take D3,K2, folinic acid ( 800mcg) and Magnesium. A small glass of coconut water most days, a banana most days, I try not to get too caught up in overthinking it.

I just figure I've been deficient longer than I realised, and it's going to take a long time to unravel all the damage, so just have to wait it out, and ride the roller-coaster. Please don't think I find it easy, but stress is what takes me down more often than anything else, so I have to let go of anything that may get me worked up. I can catch up on housework and gardening next year- this year is for watching movies and reading books......

I hope my experience helps you make sense of yours!

[Chickens44 in reply to DiSews]

Wow, sounds just like me. Why did you get the crash do you think? I tell myself the garden can wait, and the dust around the place won’t kill me. I would just like to be able to take the dogs for a nice walk, or go swimming again. Yes, thumping heart, fatigue, digestive problems (mostly loose BM couple of times a day), feeling ‘not in my body’ experiences. Last night it alls seemed to disappear and I felt normal! It was great, but symptoms back again this morning. I might try the daily injections if I don’t improve.

[DiSews in reply to Chickens44]

The crash was triggered by glandular fever/ mononucleosis/ Epstein-Barr virus ( I'm not sure what you know it as in the UK).

[Chickens44 in reply to DiSews]

Same, sounds nasty. I do think my flu and Covid jabs knocked me back. Especially as I had the over 65s flu vaccine for the first time, which is apparently 4 times stronger than the ordinary one. I know they say it doesn’t affect you, but everyone’s different.

[JesusMercy60 in reply to Chickens44]

Hello,

so as I'm laying around resting yesterday, I was going over things and my symptoms are so randomly hard to handle then oh my goodness moments of wow I'm so normal at the moment. So I thought as we've been told already but it's not easy to remember is that at 5 months our bodies are trying so hard to repair inside, all the complicated repairs we can't see only feel, then we have some calling inside us to go walking or go see the grandkids or just go out again for a drive or just go up the street for a short walk, oh yes and then let me just sweep the kitchen and wash those couple of dishes and oh also let me just sweep the porch just a little,

so then our body is trying to repair and at the same time doing these little things that use or share our b12 and suppliments during the day and then our bodies are having a fit later because we have depleted what is needed to continue the treatment that our body was trying to do. just not enough left over for the treatment.

I am injecting more often and feeling better so naturally I felt like doing more activity then a few days later oh my goodness pain, jabs in the brain and body, anxiety creeping in. so at this healing stage we need to be good to our body and let it heal. It's also hard to remember that this early in treatment we will be experiencing the symptoms anyway even when we are getting the rest we need. all the pain is healing inside us.

now if I can just keep that in my head, it's easier said than done i'm finding out.

[Chickens44 in reply to JesusMercy60]

I had a couple of hours of complete clarity yesterday evening, it was wonderful. Just hope they continue to appear more frequently.

[B12life]

have you had thyroid tests?

If it's just b12 deficiency, the progress is very very slow. as it took 4 years to deplete the b12 it will take a long time to get to 100%. it's hard to tell without feeling what you actually feel what the difference is between before you started injections and now. are you feeling even a slight up hill from when you started?

and trust me, it took 1.5 years to start feeling myself again, but at 4 months I was still bad but could tell I was going in the right direction.

any physical activity would definately set one back to zero but with the injections, the recovery back to where you were before the physical activity would return in a week. thus I highly recommend the activity be kept to the absolute necessary stuff. showering, eating, laundry, work if you work. that's it. until you get about 10 months or more into daily or EOD injections.

tell us more about if you feel there has been at least some indication of an up hill improvement if even slightly since you started the injections?

[Chickens44 in reply to B12life]

To be honest, no, I don’t feel any improvement as such. I didn’t really expect much in the first few months anyway. I was diagnosed with fibromyalgia 20 years ago, so maybe it’s just taking longer. I only really ever suffered with fatigue and all over body pain in varying degrees. I always coped though and worked (I don’t work now). I started getting anxiety episodes about 6 years ago. But always got through them. 7 years ago I managed to move house, practically on my own!

My current symptoms of fatigue, more pain, weak, nausea, bloating, anxiety, shaky only really started about a year ago. I came off pregabalin in April 2023 and it all seems to have been up and down since then. I have had some family trauma to deal with, but don’t feel that is the root cause of the anxiety episodes, feel it’s more health. I was doing okay until two weeks ago when I suddenly developed this extra shakiness, weakness, nausea back again, extra fatigue, thumping heart, etc. (heart is apparently okay). Previously I had been able to do short walks with the dogs, bit of shopping, bit of housework, had an appetite.

I only really started taking magnesium just under a week ago, as I had started Vitamin D+k 5000-10000 iu a day about six weeks ago. So do wonder if that has had an impact. Plus C and F vaccines two weeks ago.

[B12life]

what was your b12 level before your first ever injection?

[Chickens44 in reply to B12life]

A year ago it was 168 (range 150-771), earlier this year it was 250. But appears to have never been in the top range for the last 20 years, despite being a meat eater all my life! I was on omeprazole for many years, but stopped last December. I don’t have autoimmune condition, think it’s functional B12 deficiency as they all it.

[B12life]

you are DEFINITELY deficient in b12. I was 190 and bed ridden from it. Don't stop your injections or space them out. Give it time. The initial progress is very gradual because there is just so much healing that needs to be done.