So is this still reversing out or something else? Last couple of days it’s like I can feel my heart beat all over. I feel weak and shaky and nausea s coming back. Had terrible sweats in bed last night too. Burning pain seems heightened. So scary, I just feel like I’m dying.
I do wonder whether it’s one of the supplements I’m taking, perhaps I’m overdoing them, or not enough. .
Sounds like you are very poorly.
I too felt like I wax dying snd something had been missed .
Are you keeping a log ?
Have you s good rapport with G.p .
If not see another.
I went through all 6 in the practice I was in .
Also saw locums .
Perhais get more bloods done to see how your iron, vit D ,folate ( often done with B12 though (
Anything the g.p will test for.
Ruling things out .
My bloods showed little in comparison to how ill I was .
Did find low ferritin so started prescription iron then scaled down.
Did use alot of painkillers alternating .
What regime are you on?
Does a nurse administer them so csn check B.p or order bloods ?
If you think it's a supplement. Just stop them for a few days and see .
Methylcobalabin can increase neurological symptoms in some.
All just thoughts .
I hope some improvements very soon.
It can be a rough ride
Drinks lots .
Avoid caffeine.
Sip ginger for nausea .
Little and often food
Are you on loading doses? When was your last B12 injection? To me it sounds like you need another one.
I have had everything checked! I’m on B12 EOD hydroxocobalamin since end of May. Also had an iron infusion then. Taking appropriate cofactors, and I now have good levels of folate. I’m on Vitamin D protocol now too as that was low. Eating healthy diet. One minute I feel I’m a bit better then it all goes downhill.
Have you been doing more lately, because you felt better? Any chance you've got Covid? It's important to really pace yourself and give yourself deep rest days.
I went through a really rough patch about 4 months in, at Christmas into February, lots of inflammation, ended up needing antibiotics - long term sinus issues. It started with feeling my liver had a monumental clear out. Then everything from sinus to pancreas rebuilding, every lobe of my lungs having a refit.
Are you in a want to see the GP but don't want to fess up to SI situation?
Thanks. I haven’t got Covid or any breathing issues. I have actually never had Covid and haven’t even had a cold for five years! And definitely haven’t been overdoing it, haven’t had the energy.
I think it must be reversing out, as I feel my whole body is on fire with tingling and burning. And I have no energy. And a lot of people seem to hit this at the 3-4 month stage. I’m also low on vitamin D apparently and although I’ve been taking supplements I don’t think I’ve been taking enough, so upping my dosage from today. It’s a rough ride. I so want to get my life back and I want it now! Sorry, I’m just impatient.
Yep. Know the feeling. I don't think this dark wet summer has helped much.
I hate to say it, just plan for a gentler pace of life. And half the battle is dealing with other people's expectations of what you can do.
Big hugs.
You too.
I’ve been researching a lot about Vitamin D, which we get mostly from sun exposure, and it appears we are generally very low in this vitamin and like B12 it has a lot to do with mood, nerves, energy and most everything else going on in the body. So I think the lack of sun definitely affects us. So top up your D too!
I'm sorry to hear that you are so unwell! I didn’t have the sweats, but the pounding heart frightened me at first, now it can be just plain annoying . And the weak and shaky comes on me at random times. ( My GP is putting me through a whole lot of heart and lung checks , just in case) Are you getting plenty of potassium in your diet? I believe potassium supplements can be dangerous, but eating plenty of potassium rich food is helpful, and an anaesthetist told me that a bit of extra magnesium will help the potassium do it's thing. (I have a friend with kidney failure - I just eat extra of what she isn't allowed ) Also, it might pay to get your iron checked again - too much iron can also cause palpitations....
The roller coaster is a real thing in this reversing out business!
I hope you feel much better soon. 🫂
My potassium is good, and just started magnesium, although that appears to be a good level too. As i said above I’m also upping my vitamin D protocol. It certainly is a rollercoaster. I’ve been reading peoples stories on the FB PAS page from the past and they all went through this, such similar stories, and positive outcomes, so guess we’ve just got to stick it out for the ride to finish!
My potassium levels were always very good but I still got shaky (and yes it felt like hypoglycaemic stuff) and palpitations that would wake me up. It was so frightening, I ended up going to ED and having a halter monitor (recorded 80 events in 24 hours but apparently they’re only concerned if the number gets over 100 🙄).
The only thing that helped was having lots of potassium rich foods and drinks. I loathe coconut water but put it with some tropical juice and I could pretend it was a mocktail of sorts. Plus bananas, potatoes, dates etc. I tried to balance out all the sugar with loads of leafy greens and proteins etc as well.
I don’t need it anywhere near as much anymore, despite being on EOD but I’m careful to have some of the potassium foods throughout the day.
Keep an eye on your ferritin. I saw you had an infusion in May, but some people can still drop very quickly when EOD injecting.
good morning Chickens44,
well I'm at the same pace as weel with you, I just started my 4th month on the 4th. eod injections with cyano, I'm 60 and almost 61 yrs old. I tried something new. on the day of no injections the past couple of weeks it was really hard and I was in bed most of the day and I would still do errands up town but back in bed and tried to play with the grandkids and was in bed again and more emotional. so I did 1/2 ml on Saturday the day of no inj. then Sunday my usual 1 full ml yesterday. and last night I was itching way more and pins and tingling way more during the day I was in bed after doing little chores but by nite time wow I was laying in bed praying so I know this is all just more nerves everywhere waking up still and I know they all have to heal so it will be a while. today would normally be no inj but I just did my baby injection I now call it.. it was .4 ml not quite 1/2. I may get through this I believe a little faster but wow I sure do feel it more.
I was like you thinking I was doing something wrong missing something but I know my brain and body is healing. I can say that easily right now but when it hits harder my mind starts playing all kinds of tricks on me.
I've read others on hear too that the 4th month can be maybe the peak of reversing out so maybe this will be our peak..
thank you,
Rosina
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