firstly, thank u for reading this & thanks in advance for any helpful comments/suggestions. apologies in advance for the length of this post.
i've had ME/CFS for some years. the usual kind of onset, an infection that i couldn't shift. the ME/CFS condition got out of control 3/5 yrs ago when i presented with (non age related) severe chest pain & collapse. following the first collapse my normal b/p of 130/70 dropped to 70/50 ish. following the first collapse, i started having swallowing/breathing difficulties. the b/p eventually stabilized @ circa 90/60, but goes up to 100/65 when i go to my GP as i get in a state. my GP says this is within the normal range. btw, i've had some terrible experiences with my GP since i moved to the area where i presently reside. however, because of the low b/p i have to lie flat for many hrs a day as i collapse when i stand/sit up, this is worst towards the evening, when i'm thoroughly exhausted. cos my ECG/ECHO were normal i was refused a referral to a cardiologist.
i had a blood mitochondrial test done by an Environmental Doc. (ED) - an expert in ME/CFS. the results showed some gross abnormalities in the cell mitochondria. 7 of 14 markers were abnormal. the Environmental Doc advised the 'Sanatra Protocol' (for ME/CFS) which includes b12 injections 0.5 mgs alternate days until ME/CFS symptoms level out. it seemed that once the liver b12 levels were replenished, i started to improve measurably. it was amazing. i could string a few sentences together again. the chest pain decreased & i regained the stone & a half that i had lost in weight. the swallowing/breathing problems improved measurably. and the left side of my body began to get it's feeling back.
the problem: i find that i now have, to have the b12 injection much more frequently than previously to get the same effects. i was having the 0.5 mgs @ 3-4 week intervals. now i have to have them at least weekly. the swallowing/breathing difficulties are becoming troublesome again.
1)has anybody on here, have had swallowing difficulties or/and chest pain with b12 def.?
2)any comments ideas on what's happening would be most appreciated. btw, the ED diagnosed Cardiomyopathy secondary to ME/CFS. my GP doesn't consider ED's to be relevant. however, i did eventually get a referral to a Cardio & am awaiting further cardio tests. the cardio thinks, i probably have POTs, so has referred me for test to rule that one in or out, whatever the case maybe. there's a long waiting time for the cardio appointments.
again big thanks for any illuminations on the subject. and apologies for the length. i feel 'context' is important.