But is it really inappropriate activaction IF the foods have toxins sprayed on them? I mean I have MCAS and react to so many foods, but is it really the food or the junk sprayed on it? That glysophate (spelling ? That roundup). The same goes for other things I have reacted to too. Like air freshener, ink, various cleaners, perfume, etc. I once took a photo of the ingredients on the can of air fresener that had made my face all red + swollen + throat burning for over an hour. I wasnt the one that had sprayed it, but I was the ONLY one that had reacted to it. Everyone else was just fine! But when I showed those ingredients to my allergist she only said "Thats just a bunch of toxic chemicals". But she never explained why I was the only one who had gotten sick from it! That was years before the MCAS diagnosis or the hEDS. So is it really inappropriate if the things we are reacting to with MCAS have toxins in it......??? People are exposing themselves to these toxins daily and have no idea. I mean those toxins are a danger. Its a man made danger. Its been almost a year now since I cannot go onto the branch libraries around here anymore. Due to the products these use in there. So I guess if you dont get MCAS from these hidden toxins in common products + food then years later you get cancer or parkingsons or something else? Id rather have the MCAS. Yeah its super annoying + very limiting but I guess it warns me of these hidden chemicals.
The link to her other website listed in the description doesn't work. At least it did not work for me....if you had written out the long title of the location where the chiari and mcad clinic is ....we could look it up but when link is dead...it's hard to go look for it again.
If a physician orders the 24 hr urine test (the one she refers to that needs to be refrigerated throughout the day and until it is in the hands of the lab), should a patient try to trigger themselves in order to "show the mast cell chemicals (prostoladin ?) that I cant spell. The second part of the diagnosis is the need for data to show the mast cells are misbehaving...since you can choose when to do the urine test...just curious if it would be wise to trigger oneself sometime during the course of the 24 hr urine collection period. Esp since most times we get the trypase blood test in the dr office..for most people it is normal unless you are triggered. (Most ppl try to avoid being triggered...esp at the dr office.) Anybody know the answer?
I ALWAYS tell my patients NOT to trigger a flare on purpose. I had one patient do that and it took them months to recover AND the labs were not even helpful. There are many reasons why lab testing is problematic. I tell my patients that if the tests come back abnormal it IS helpful. If they come back normal, however, that does NOT rule anything out - it is just NOT helpful.
You guys should have her back to discuss all her recent findings with HSD/h-EDS ppl and things ppl might want to bring up with physician to be screened for...the why your mast cells are misbehaving. Here is a link to vid that was on her clinical paradigms website (it is for a french group whereby they are simultaneously translating into french so a bit of a delay...but unlike her normal presentations...you actually have time to read the slides and actually see them other than switching btw her head and her slides. ) th-cam.com/video/JwQjPg9wwu0/w-d-xo.htmlsi=wo06_zhWIYS_d3qy
But is it really inappropriate activaction IF the foods have toxins sprayed on them? I mean I have MCAS and react to so many foods, but is it really the food or the junk sprayed on it? That glysophate (spelling ? That roundup). The same goes for other things I have reacted to too. Like air freshener, ink, various cleaners, perfume, etc. I once took a photo of the ingredients on the can of air fresener that had made my face all red + swollen + throat burning for over an hour. I wasnt the one that had sprayed it, but I was the ONLY one that had reacted to it. Everyone else was just fine! But when I showed those ingredients to my allergist she only said "Thats just a bunch of toxic chemicals". But she never explained why I was the only one who had gotten sick from it! That was years before the MCAS diagnosis or the hEDS.
So is it really inappropriate if the things we are reacting to with MCAS have toxins in it......??? People are exposing themselves to these toxins daily and have no idea. I mean those toxins are a danger. Its a man made danger.
Its been almost a year now since I cannot go onto the branch libraries around here anymore. Due to the products these use in there.
So I guess if you dont get MCAS from these hidden toxins in common products + food then years later you get cancer or parkingsons or something else? Id rather have the MCAS. Yeah its super annoying + very limiting but I guess it warns me of these hidden chemicals.
Good points!
The link to her other website listed in the description doesn't work. At least it did not work for me....if you had written out the long title of the location where the chiari and mcad clinic is ....we could look it up but when link is dead...it's hard to go look for it again.
Sorry about that. This episode was released on 9/30/21 and I believe she has changed practices multiple times since then.
Dr Maitland was so informative!
There are tons more vids with her on other channels...like the Ehlers-Danlos Society channel.
Have you watched any other episodes?
If a physician orders the 24 hr urine test (the one she refers to that needs to be refrigerated throughout the day and until it is in the hands of the lab), should a patient try to trigger themselves in order to "show the mast cell chemicals (prostoladin ?) that I cant spell. The second part of the diagnosis is the need for data to show the mast cells are misbehaving...since you can choose when to do the urine test...just curious if it would be wise to trigger oneself sometime during the course of the 24 hr urine collection period. Esp since most times we get the trypase blood test in the dr office..for most people it is normal unless you are triggered. (Most ppl try to avoid being triggered...esp at the dr office.) Anybody know the answer?
I ALWAYS tell my patients NOT to trigger a flare on purpose. I had one patient do that and it took them months to recover AND the labs were not even helpful. There are many reasons why lab testing is problematic. I tell my patients that if the tests come back abnormal it IS helpful. If they come back normal, however, that does NOT rule anything out - it is just NOT helpful.
You guys should have her back to discuss all her recent findings with HSD/h-EDS ppl and things ppl might want to bring up with physician to be screened for...the why your mast cells are misbehaving. Here is a link to vid that was on her clinical paradigms website (it is for a french group whereby they are simultaneously translating into french so a bit of a delay...but unlike her normal presentations...you actually have time to read the slides and actually see them other than switching btw her head and her slides. ) th-cam.com/video/JwQjPg9wwu0/w-d-xo.htmlsi=wo06_zhWIYS_d3qy
Thank you for sharing that link. I will check it out when I can!