An observation - any thoughts?

[Caradoc1a]

I started SI on 22/12 EOD. Had more neuropathy initially, probably due to reversing out. Last few days I have felt much better with massively reduced brain fog and less neuropathy. Previous 2 days I actually walked (slowly) outside first time for 8 weeks. Did a very gentle 2.8k yesterday with a cafe stop and felt OK. Today is not a SI day. About an hour ago I had burning in my big toe joint then ankle and calf pain and then burning up both legs. Plus increased tinnitus, rapid h/beats and light headed. Having just watched Dr Andrew Klein's video on B12, I decided to self inject today as well. He said any B12 is excreted after 6 hours. Are my returning symptoms a product of doing too much too soon? Thank you!

[Rexz]

One of the often overlooked and not so often mentioned things to heal peripheral neuropathy is blood flow. Yes, if you're B12 deficient B12 therapy is critical, but it takes a long time, months, depending on how deficient you were to heal. Part of this healing process is to get blood flow to your extremities. I know, as you're experiencing, that's tough as you're starting out but keep at it. Keep moving, exercise your legs, feet, and hands to heal those nerves. Vigorous massaging of feet is also great although it too can be painful. As I started from being bedridden for some time to about where you are , as I started to walk it became very painful for a bit. Like a thousand minions stabbing my feet with ice picks! This was those nerves healing and waking up along with Mast Cell histamine activation.Rexz

[Caradoc1a in reply to Rexz]

Thank you. I will now look up mast cell histamine activation! I am learning so much!!

[bookish in reply to Rexz]

Hi, did the mast cell issue persist or has frequent B12 calmed it down at all? Cheers

[Rexz in reply to bookish]

Yes, the nerves that were going to heal have healed as it's been several years now. I do have a small bit of residual numbness in part of right foot and right hand that after several years of B12 treatment is most likely permanent. But no more pain!!The thing about Mast Cells, there are trillions of them all over your body, mostly along the lining of digestive tract and skin. They work normally when you have an insult to your skin like a splinter or bee sting. These cells secrete histamine. This causes you blood vessels in that local area to dilate and become a bit permeable so they actually leak blood into the insulted area, say around a splinter. This allows red blood (what you see as redness) and white blood cells to fight infection. That's the normal function.

But if you have B12 def enough to cause de-myelination of protective coating of nerves, these nerves become exposed. If a Mast Cell is right up against an exposed nerve then that can cause sensory pain if that cell decides to produce histamine. What I found, through my visits to University Hospital was that I was "Sensitive" to Gluten and dairy. Not "intolerant" to as in celiac disease. Sensitive meaning it never showed up that I could sense anyway until my nerves were damaged from the B12 def. Then if I'd eat a piece wheat bread all trillion of my Mast Cells would fire histamine at the same time. Through ultrasound my veins were measured surely showing dilation and blood pressure drop. So I stopped all Gluten, dairy, and refined sugar, continued my B12 injections every four to six days. Continued to walk and hike. I have since experimented with eating some wheat bread (gluten) and experience no pain so I know those nerves are healed. This was over the past four years time frame.

I should have explained this a bit better to Caradoc1a

[Caradoc1a in reply to Rexz]

Thank you - I look it up and a bit overwhelmed!! 🙄

[Rexz in reply to Caradoc1a]

Yeah, it's a lot to take in for sure. These bodies of ours are actually quite fascinating. I think anyway. 😳

[bookish in reply to Rexz]

Wow. Thank you so much for all that. I've known since I quit both back in 2017 that gluten and dairy have been a problem for me since childhood (as symptoms which I'd had for years but never associated went away). Histamine didn't become an issue until I started getting more clear neuro symptoms 25 years ago, and only badly in 2018. I can tell for me that it is a mast cell problem as it isn't only histamine, I get other chemicals too, sometimes earlier than the histamine effects depending on the trigger. Quercetin and vit C, magnesium, ginger all help enormously but the thought that this might improve with the B12 is just brilliant. I had heard that the mast cell and nerve should be considered so closely tied as to be one unit, but hadn't considered the implications of the demyelination on that adjacent mast cell. I am so glad that they measured the signs for you and that you had something tangible. And more to the point, that it has resolved. Hugely encouraging. Thanks again and best wishes

[Caradoc1a in reply to Rexz]

Since I posted this, since Thursday 16th, I am now experiencing lots of red itchy & sore spots on my legs and into my back. I'm also feeling itchy all over. I took antihistamine and it calmed it a little. Is this likely to be a produce of mast cell histamine activation? I'm worried that its an allergic reaction to the VitB!!

Thank you!!🙏

red spots on leg

[Rexz in reply to Caradoc1a]

Hi, rash like this can be caused by an allergic reaction to B12 injection. Yes it's a mast cell histamine reaction. If this is new then antihistamine should help as it seems to be. Watch it for a few days it should go away. If it persists after next injection, then maybe consider changing B12 brand/source. I'm certainly not a doctor so suggest you consult with your doc on this also it it does not remedy itself.

Best wishes, Rexz

[Caradoc1a in reply to Rexz]

Thank you!! I'm getting myself a bit in a state thinking that if it's an allergy to cobalt, no idea what to do!! I have GP appr in 5 days. I'll stop injections in the meantime and see it clears up. I'll take sublingual b12 instead - low dose!

[Rexz in reply to Caradoc1a]

Quite possibly it is some additive in the B12 like an impurity or a preservative. That's why I suggested if it happens again to consider changing a source or brand...

[Caradoc1a in reply to Rexz]

I use Panpharma from Apohealth.

[Rexz in reply to Caradoc1a]

Caradoc1a, Just another thought for your consideration is iron deficiency. Iron Deficiency is common in people with AIG/PA and can also cause rash and itchiness. Maybe something to have checked. A full iron panel as it is possible with AIG/PA to have iron deficiency without anemia (IDWA). Ferritin and hemoglobin alone are note valid markers for those with AIG/PA. See my post on IDWA.

[Caradoc1a in reply to Rexz]

Thank you! It's on my list for GP along with folate, ferritin and VitD. I'm aware that increasing B12 will increase the use of these co-factors. I didn't know thatbreduced iron causes itching!!

[Caradoc1a in reply to Rexz]

Hello again – I have since been diagnosed with shingles which are a bit atypical. Both sides of the body and tracking nerves which I think were affected by low b12. No classic shingle blisters but feels like nettle rash, a bit like mild neuropathy returning.

I overdosed on smoked paprika the day the rash began - my hand shook as I added it to a stew and half the packet went it 🙄 and this could have provoked a histamine reaction. Although it is still growing.

Maybe it is homocysteine provoking a mast cell histamine response? I spoke to Dr Andrew Klein yesterday before the shingles diagnosis and he dismissed possible homocysteine rash, saying not very likely. But it does seem to be common.

Anyway, thank you again for help - I not longer feel so stressed - and stress doesn't help with the shingles. I think it was all the anxiety and stress about injecting b12 without GP approval which set it off.

[bookish in reply to Rexz]

Hi again, sorry to bother you but I wondered if you could point me to anything to read or watch about the lack of myelin and mast cell interaction, or was this direct from a consultant? I'd love to have something to back up this possibility when I discuss with my neuro. Many thanks

[Orchard33]

They probably are. It takes a while to heal after long term deficiency.

[Sleepybunny]

"Last few days I have felt much better with massively reduced brain fog and less neuropathy"

I'm so pleased to read that.

Other forum members have reported an increase in symptoms when they exert themselves.

[Caradoc1a in reply to Sleepybunny]

Thank you - it certainly felt marvellous. Is there an explanation as to why symptoms return with exertion? Is it due to still not enough oxygen in the red blood cells supplying muscles and nerves?