Just wondering if anyone understands anything about what mechanism COULD be going on here.
I have had severe body wide itching since last November when I reacted to Doxycycline. My GP said this was an allergy, my M.E doctor said it was immune activation not an allergy.
I stopped the doxy and it went away after a couple of days. I tired the Doxy again, the itching came back, so I stopped it again. Then I started on a round of trying a number of different antibiotics, all of which I couldn't tolerate for one reason or another (but no itching at that point).
Then I started Omeprazole for severe 24 hr a day acid reflux and the itching came back, then settled. Then I took a herbal remedy for my lungs and immune system strengthening and the itching started again. I stopped the herbal and the herbalist took out the immune component and gave me just a gentle lung tonic. This caused itching and then the itching never stopped, even though I withdrew the herbs.
I tired Loratidine (anti histamine) and this worked for two weeks then stopped working. Then I tired cetirizine and this only worked for two days. Then I tired piriton at night and this helped a bit, but was sedating and I didn't want to take an anticholinergic drug anyway.
So I stopped ALL anti histamines and that seemed sort of ok and started a low histamine diet which is very tough but seemed to help. Eventually I had to double up on the PPI as the reflux was not controlled by the normal dose. Around this time, but hard to know if related the itching came back in full force. MY GP suggested a double dose of cetirizine - which is helping but not curing the itching - just damping it down a bi and the drug is making me feel like a zombie plus nightmares at night and feeling very dizzy and crappy.
KDM has prescribed calcium tablets for the itching - 500mg 3 x daily - don't know if this is helping. Now I feel ill form the drugs AND I am itching still! the low H diet is not working anymore, but if I go off it the itching seems to get worse (but hard to tell).
I have a bowel investigation and tooth filling on hold due to worries about the drug reactions involved. My GP thinks some kind of immune activation caused by the initial drug? I don't really understand this - he also called it idiopathic urticaria - but I don't have any rash.
The itch is body wide - everywhere at once - and also at times very painful, and very distressing to suffer from - on days it isn't controlled at all I just sit and cry and cant cope. I have also noticed an increase in burning patches on my arms recently.
I have looked into a doctor who can diagnose MCAS in the UK but his fee is way too expensive. My GP offered to refer me to an immunologist but admitted the wait could be over a year so he has referred me privately - but who knows how sympathetic he will be or even whether he will understand anything about M.E?
SO far I have Bartoanella positive, Cpn positive, high IL8, high PEG2 (very high) low positive ANA titres, (LL FROM kdm) and a slightly elevated IGM on serum protein electrophoresis and very low ferritin for years despite iron supps (NHS tests) the GP said the IGM WAS NOT SOMETHING THEY WERE CONCENRED ABOUT sorry not shouting - logn post v tired now...
I have had severe body wide itching since last November when I reacted to Doxycycline. My GP said this was an allergy, my M.E doctor said it was immune activation not an allergy.
I stopped the doxy and it went away after a couple of days. I tired the Doxy again, the itching came back, so I stopped it again. Then I started on a round of trying a number of different antibiotics, all of which I couldn't tolerate for one reason or another (but no itching at that point).
Then I started Omeprazole for severe 24 hr a day acid reflux and the itching came back, then settled. Then I took a herbal remedy for my lungs and immune system strengthening and the itching started again. I stopped the herbal and the herbalist took out the immune component and gave me just a gentle lung tonic. This caused itching and then the itching never stopped, even though I withdrew the herbs.
I tired Loratidine (anti histamine) and this worked for two weeks then stopped working. Then I tired cetirizine and this only worked for two days. Then I tired piriton at night and this helped a bit, but was sedating and I didn't want to take an anticholinergic drug anyway.
So I stopped ALL anti histamines and that seemed sort of ok and started a low histamine diet which is very tough but seemed to help. Eventually I had to double up on the PPI as the reflux was not controlled by the normal dose. Around this time, but hard to know if related the itching came back in full force. MY GP suggested a double dose of cetirizine - which is helping but not curing the itching - just damping it down a bi and the drug is making me feel like a zombie plus nightmares at night and feeling very dizzy and crappy.
KDM has prescribed calcium tablets for the itching - 500mg 3 x daily - don't know if this is helping. Now I feel ill form the drugs AND I am itching still! the low H diet is not working anymore, but if I go off it the itching seems to get worse (but hard to tell).
I have a bowel investigation and tooth filling on hold due to worries about the drug reactions involved. My GP thinks some kind of immune activation caused by the initial drug? I don't really understand this - he also called it idiopathic urticaria - but I don't have any rash.
The itch is body wide - everywhere at once - and also at times very painful, and very distressing to suffer from - on days it isn't controlled at all I just sit and cry and cant cope. I have also noticed an increase in burning patches on my arms recently.
I have looked into a doctor who can diagnose MCAS in the UK but his fee is way too expensive. My GP offered to refer me to an immunologist but admitted the wait could be over a year so he has referred me privately - but who knows how sympathetic he will be or even whether he will understand anything about M.E?
SO far I have Bartoanella positive, Cpn positive, high IL8, high PEG2 (very high) low positive ANA titres, (LL FROM kdm) and a slightly elevated IGM on serum protein electrophoresis and very low ferritin for years despite iron supps (NHS tests) the GP said the IGM WAS NOT SOMETHING THEY WERE CONCENRED ABOUT sorry not shouting - logn post v tired now...