Ravn
Senior Member
- Messages
- 147
A lot of people with ME and/or POTS are thought to have low blood volume and that this low blood volume can cause a variety of symptoms.
Now, if you also have haemochromatosis and therefore have to be treated by blood letting, then this loss of blood logically should lead to really, really low blood volume - and an aggravation of symptoms.
In this case, should there be a treatment protocol that says ME and POTS patients should, for example, give smaller quantities of blood more often?
My own experience following a venesection (I have the full suite of OI symptoms but have never had my blood volume measued, so don't know how much of a factor it is for me) used to be half a day of mildly increased dizziness followed by a day or two of extra energy, then back to base line. That was before my ME turned severe (housebound, not quite bedbound). Now the venesection just knocks the living daylights out of me immediately, not just OI but full-blown PEM, but I don't know how much of this is simply due to having to travel for the treatment and how much is due to the treatment itself.
Your experiences?
Now, if you also have haemochromatosis and therefore have to be treated by blood letting, then this loss of blood logically should lead to really, really low blood volume - and an aggravation of symptoms.
In this case, should there be a treatment protocol that says ME and POTS patients should, for example, give smaller quantities of blood more often?
My own experience following a venesection (I have the full suite of OI symptoms but have never had my blood volume measued, so don't know how much of a factor it is for me) used to be half a day of mildly increased dizziness followed by a day or two of extra energy, then back to base line. That was before my ME turned severe (housebound, not quite bedbound). Now the venesection just knocks the living daylights out of me immediately, not just OI but full-blown PEM, but I don't know how much of this is simply due to having to travel for the treatment and how much is due to the treatment itself.
Your experiences?