What? Google alert? How ever did you do that? This lets you know when anything new shows up on the net containing th word Erythromelalgia? Thank you so much Nel for sharing this.
I have google alert for all my groups and FB pages Today's EM alert was the first so it's not an awful lot of use. Pinterest is more useful but not for EM sadly, but I'm still exploring there when I have time.
Thank you for posting this. It reads a bit like Greek to me, but it’s exciting to know that researchers are poking about and trying to find the causes of this disorder.
After reading this article.......seems like a smart person could say.....ok, that is fact, now to get a better life you need to do XXXXXXXX. Is there a smart person in the house? Seems like a voltage situation? So we need to increase/decrease voltage somewhere in the body? How to do that? Drink an acid solution (vinegar, apple cider, orange juice). That should change something. Maybe a basic solution? Baking powder? Maybe that is why "green drink" is good for some of us? What are your ideas, suggestions? Jim
I know it looks like Greek. I was just so pleased to see that research is going on that I got over my disappointment that a recommendation to eat icecream is not in the conclusion. I thought some of the more medically savvy people in the group might be able to make sense of it. Mads come back, we need you! I just pictured these young people, beavering away in their office/lab somewhere, comllaborating with other young people (everybody is young to me) in different parts of the world and then I thought about the small kids with EM and just hoped that ongoing research is going to help them some day.
Dont know about smart Jim, what you propose is not far off the mark ;). Lot of EM'ers take Apple vinegar/baking powder. I drink those 'green drinks' myself lol!. On quick critical appraisal ,I think we ought to question changing the pH of the entire body in order to change mutation effects on EM. Theoretically sounds good, but truly viable?. This mutation was also found pertinent to those with primary familial EM (actually case study basis as only found in one 15 year old ) .
Thrilled to see more EM research taking place. Sign of good things to come :-)
What is the 'green drink' you are talking about? Does it help at all? I was wondering because one of the 'remedies' that is supposed to help me with my food intolerances is ENO (the plain one) -Royal Prince Alfred Hospital, Sydney Australia recommends it as a 'rescue remedy.'. It is to be taken when one has eaten something that causes an adverse reaction, (in my case the adverse reaction was EM). It has sodium bicarbonate and sodium carbonate and citric anhydrous. (Just type in ENO and it should come up top of the search page hopefully). Eno's is marketed for upset stomach (nausea) and indigestion. Some people with food intolerances say it really helps their reactions to foods they have eaten (I've only come across one person who follows this diet that reacts with EM symptoms), but I have not had any relief from taking ENO if I've eaten something that will trigger a bad flare like strawberries, or chocolate or the wrong sort of bread etc. Now I'm musing should I be taking more of it perhaps. Or trying one of those acid/alkali green drinks you are talking about? Someone may find ENO's helps them if they have a food/erythromlalgia connection that is why Ive included it here.
I can't believe I've got to this point but I'm looking back fondly to the days when I had a substantially more control over my EM flares by eliminating so many foods from my diet and not touching them. Staying away from certain foods still help but it's more than that now.
By the way, one of the doctors of the allergies and intolerances clinic at the above hospital said my 'burning skin' was cause by the reaction of my senistised nerve endings??? So although I have the diagnosis of EM and have had for about 8 0r 0 years and was, I thought to do with my blood vessels, this doc thinks my reaction is caused by sensitised nerve endings?? This gets so confusing. At any rate, Enos did not help my 'sensitised nerve endings.'
http://en.wikibooks.org/wiki/Structural_Biochemistry/Protein_function/Hemoglobin I'm not smart but reading this gave me a little idea of what a salt bridge is in the human body and in our cell structure. I don't know if the open salt bridge is causing a buildup or a decrease in whatever chemical or metal that causes our problem. In batteries there are salt bridges which cause the negative and positive ends of the cell. Left open it breaks down the iron on one end and builds up the copper on the other end. My guess is our feet are getting over charged with electrical currents from our cells or in the neurons in our brain sending false messages to our feet sort of like the neurons send false messages to the nerve ends of the muscles in fibromyalgia or as in clinical depression when the neurons misfire causing confused signals in the brain.
My green drink is called Green Magic . Its a blend of 16 of the most powerful super foods containing completely natural, organically grown ingredients in one unique formulation with key ingredients such as spirulina, wheat grass juice and royal jelly.Contains a spectrum of vitamins, minerals, nutrients and trace minerals - potent ingredients that deliver high protein levels and essential amino acids.
blue said:
Hi Mads and Jim
What is the 'green drink' you are talking about? Does it help at all? I was wondering because one of the 'remedies' that is supposed to help me with my food intolerances is ENO (the plain one) -Royal Prince Alfred Hospital, Sydney Australia recommends it as a 'rescue remedy.'. It is to be taken when one has eaten something that causes an adverse reaction, (in my case the adverse reaction was EM). It has sodium bicarbonate and sodium carbonate and citric anhydrous. (Just type in ENO and it should come up top of the search page hopefully). Eno's is marketed for upset stomach (nausea) and indigestion. Some people with food intolerances say it really helps their reactions to foods they have eaten (I've only come across one person who follows this diet that reacts with EM symptoms), but I have not had any relief from taking ENO if I've eaten something that will trigger a bad flare like strawberries, or chocolate or the wrong sort of bread etc. Now I'm musing should I be taking more of it perhaps. Or trying one of those acid/alkali green drinks you are talking about? Someone may find ENO's helps them if they have a food/erythromlalgia connection that is why Ive included it here.
I can't believe I've got to this point but I'm looking back fondly to the days when I had a substantially more control over my EM flares by eliminating so many foods from my diet and not touching them. Staying away from certain foods still help but it's more than that now. By the way, one of the doctors of the allergies and intolerances clinic at the above hospital said my 'burning skin' was cause by the reaction of my senistised nerve endings??? So although I have the diagnosis of EM and have had for about 8 0r 0 years and was, I thought to do with my blood vessels, this doc thinks my reaction is caused by sensitised nerve endings?? This gets so confusing. At any rate, Enos did not help my 'sensitised nerve endings.'