I just found out that a certain mrs. Carine Prevot has written a book called: ‘Erythromelalgia, how I fixed it’. (august 2016). In the resume on the back, she claims to have cured her EM, but to know how, you must buy her book. I live in the Netherlands and it looks like it’s not available here at the moment.
Has anyone of you read this book? And what are your thoughts about her ‘solution’ for EM? Thanks!
Hi, I have not read the book, but I would be concerned if anyone actually had a “cure” after so many of us have researched and tried various therapies. There can be upwards of 22 genes involved in EM, making treatment complicated and very individual.
Personally I would be very suspicious of her claim. I found her book on Amazon, but couldn’t find anything about her. I also searched for her by name in a program I use and it didn’t come up with anything. She may well be legitimate, but we don’t know.
Thank you for your comments! standing_cat, you were right: you can find the author at this site, under her firstname ‘Carine’. She has posted several times in 2015 and 2016. This must be the same person Unfortunately, I couldn’t find any comments of other members who tried the ‘protocol’ of Carine and have succeeded to reduce the EM.
So it seems to be a cure only for the lucky few… But it’s worth a try!
I don’t know what worked for her, but a low oxalate diet is working miracles for me. And I might be naive, but I would never hold back helpful info abpit EM and try to profit from it.
It’s like refusing to let someone in your lifeboat when there’s plenty of room and supplies…
If you want info about what worked for me, there is a yahoo support group called TLO (Try Low Oxalate) that has tons of helpful information.
If you decide to try it, start gradually. I don’t know how many people it could help, but I have been able to go back to work after 10 years of disability and agony. I walk everywhere and stand for hours. Before, I couldn’t tolerate a soft sheet touching my feet. I still have to wear my amazing shoes and once in a while use cooling, but most of the time I leave my cooling things in my bag and go the whole day without them.
So keep trying new things. Keep looking for answers and for things that make the symptoms feel better even for a little while. Don’t give up. I almost didn’t try this diet, I was so jaded and exhausted by pointless medical diets and endless, useless treatments. So keep going, keep trying.
Thanks for your advice!
How amazing that this oxalate diet has done so much for you! :)) I had never heard of oxalate. It looks like it is often linked at kidney-stones. May I ask you a personal question? Have you ever had kidney-problems in of before the years your EM started? Or any abnormalities in blood values linked to kidney problems?
Maybe you have no idea why this oxalate is linked to your EM. Most important is that it works for you! I will certainly try this. - Greetz, Vlinder
Hi Cindy, Wow that is so amazing … I’m so glad you are able to go back to work after 10 years of pain!!! Echoing Vlinder, I was wondering what made you try low oxalate in the first place. Also, about how long did you begin to notice a change? Thank you
I did also find her book and bought it for $10 and was very sad. She suggests drinking tart cherry juice, evening prim rose pills, frankincense oil on her feet and doing a “ desensitize” thing with her feet and a hot water bottle. I was bummed to say the least. This is a hard road you are all on with this Diease. I see it day in and out with my daughter and it breaks my heart. I would suggest saving your money.