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Porphyria link - references?

Discussion started by Jodie 6 years ago

Hi all,

Leaving no stone unturned I'm having a bone marrow biopsy for Mastocytosis in a couple of weeks (even tho tryptase is normal, its the only way to be 100% sure) + ultrasounds for possible cysts or benign tumours on liver, kidney, spleen, which might be interefering with my body's ability to detox.   I also just had my haemotologist on the phone to say he's had an odd result for a urine test I just had for porphyria - 2 results were normal and 1 wasn't ..all from the same sample, I'm not quite sure what he was looking at.. however he says he's never seen this before, they are going to do a restest.

 

I guess this is a question for Maff then, reading about your possible porphyria link with MCS (http://www.ei-resource.org/illness-information/environmental-illnesses/multiple-chemical-sensitivity-(mcs)/) - do you have an reference papers I can show this guy when I see him?  He doesn't know much about MCS but is very bright and very open to all possibilities, however I need to give him some solid info, quite possibly we are onto something here.   If anyone else knows of any solid research into the connection, I'd be grateful!

 

Thanks!

Jodie

 

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Jodie
Jodie
BTW Maff, do you happen to know which study this was... "One study found that 60-90% of MCS patients tested showed porphyrin abnormalities" (mentioned in your write-up on MCS intro page)?

Cheers!
6 years ago
Jodie
Jodie
Thanks Maff, you're a star!
6 years ago

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