That is great !!! So wonderful that you got to get away and ENJOY it !!
Did you increase the temp in your house as soon as you started the protocol?
Yes, I increased the house temp by a few degrees the 1st day and then decided to bring it up to the temp my family is comfortable at (70F). At first it seemed much too warm, but now I’m used to it.
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Wow! Thank you to everyone who is posted here. I gave up on FB a while ago (though I never joined the EM group). But I might go back for this.
Not sure when or if I’ll get the courage to try this, but if I do I’ll let everyone know what happens.
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Hello ! I just wanted to update you all on how I am doing since starting the protocol in December. I am doing so much better !!! Only elevate at night. Sit on recliner and now…even more time with my feet on the floor! Couldn’t do that before and now I do it ! Also, I was able to sit in my porch 73 degrees with ceiling fan. I could not do this before at this temp! I also covered my feet with a sheet a few times in bed. Could never ever do that. I am able to go outside up to 70 now. Before it was 63. My AC in my home is set to 69 now before it was 63. Huge improvements for me. During the day I see mostly normal color now. Can you believe it? Believe it. I am living proof. I am so thankful for everyone who encouraged me to try it. I will be posting a video of testimonies on the protocol in a few weeks. All the Best, Paula
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Hi Paula,
Thank you for your uplifting posting and for all the work you do to make the public aware of this condition. I’m excited that you’ve had such great success in your healing so far. It gives many of us courage and better insight toward making some steps in recovery on our end. I’m so glad you took the time to write us all.
Sue
Hi Sue
You are very welcome. I hope that some too find relief with this.
All the best,
Paula
Hello !
I am looking for one more person to be willing to help spread Bob’s Protocol viral not just on the private forums. There are many people that do not belong to the EM forums and have not heard about this protocol. We are going to try our best to help those people that do not get on facebook etc. by having a few people tell their experience with the protocol. It will consist of you video taping yourself for less than two minutes. We have two people and Bob that will be in the video. I would like one more person to help out. Please consider helping others. I know it’s not fun to video tape yourself. If you don’t want people to see who you are, I can block out your eyes and some features on you but it is important for other EM people to not feel isolated and alone and seeing our faces and hearing our voices will help them feel not alone. This protocol has helped so many people. Will you help, help others around the world? If you are interested please send me a message and I will send you questions to answer that will help you on your speech on video. Thank you!
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thanks for the info. I will need to think about trying this.
Every once in a while, this thread pops up. Some people have had good success with this non-drug complementary therapy. As always, check with your doctors before you do anything new, whether it involves meds or not.
How is everyone on this thread, anyway? We’d love to hear from you again.
Seenie from Moderator Support
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I continue to have great success with this protocol. I still soak in 110 F water once a day. Life is so much better - EM has been reduced to an occasional annoyance rather than a life-limiting disability. I do not take any medication.
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I’m on Bob’s protocol for 10 months now. The EM in my feet (and a bit in my face) is severe, it makes me disabled. But…without this protocol I’m not sure if I would still be alive. The pain was so devastating. Now I can have hours (when I’m not active) when my feet are ‘silent’ and a bit cold, which is the best condition for me. Luckily I have no Raynauds.
My EM now is still severe and I cannot bear heath and sunlight on my feet. But my life has value again, I’m still very controlled by this disease, but I can enjoy little home-activities again en sometimes sit outside in summer with my feet in the shadow. When I’m not active I can hold out longer without pain than before. And the bathing made it possible to go cycling on my handbike (in the evenings, when the sunlight has lost its strength). Without the bathings I could not bear the pain while exercising.
Long story short: it really has saved my life and made it worth wile again. 
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Hi Vlinder, Where do I find “Bob’s Protocol”? Is it just 20 min per day in warm water to start, then increase the temperature until it gets hot? I look forward to any help I can get. Thank you, Dale
Hi Dale,
Yes, 20 minutes is enough, don’t go further than 105 fahrenheit, that’s hot enough. Bob’s protocol is explained in the posts of RayofHope on this website. But, you can also join the facebookgroup ‘Erythromelalgia; Fight Fire With fire, Bob’s hot water protocol and more’. The founder of this facebookgroup has based the group on the experiences with this hot water protocol. I hope you will find all the information you need, but I will be happy to answer questions any time.
Good luck!
Vlinder
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Hi Vlinder!
Thank you so much for the response. I will look at RayofHope but will probably start it after the holidays as I don’t look forward to trying anything warm or hot. Right now heat is my enemy … hehe. Thank you again as you are so kind to explain.
Dale
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my problem is that I do not know how to implement the protocol.
@rayofhope
Terrific post! I have read about this protocol theory several times. The 1st may have been on your FB page. Thank you for all that you do.
Regarding doing Bob’s protocol for myself. Not sure due to the fact a hot bath started my endless EM flare. I believe I have had EM longer then I have had Raynauds. Over 20plus years. My bottoms of feet have burned since I can remember, never have liked shoes on. I wonder if the difference in peoples responses to the protocol treatment isn’t about being primary or secondary.
Were you able to located the protocol?
Is there any way I can help you by answering any questions you have? I would suggest joining the facebook group https://www.facebook.com/groups/341524146368334/
and learn from others that have EM and tried the protocol. You can also message me if you like.
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I have heard from those with primary and secondary. Some it helped Primary. Some it did not. Some helped secondary some it did not. What factors into this? Some were not able to stick with it as well to see if it would work. It is like a medication. You have to try it to know. It is worth trying to know. We swallow pills every day to find out…even reading the risks and side effects and ingredients …and still we swallow …and I am the worst of all. I have side effects on every medication. I have taken medication that could have killed me just to see. So doing the hot water soak, I don’t look at it any different. I told myself that I would suffer the first week so badly. I mentally prepared for it. Made my schedule as free as it could be. Dove in. First few days were hard. I told myself push through it and many helped me on the fb groups to stick with it. I gave it one week. This saved my life. I was in a chair elevating 24/4 for almost a 1 year and half. No quality of life. No medications has done this. Just the soak. So for me, I would suffer again if I knew this was the outcome. I was hoping for this outcome thus why I stuck with it. I now drive. Do my daily chores. Have a little social life. No elevation. Tolerance has become better. Less flares and less pain.
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Hello everyone ! I am sooooo happy to see that the protocol has helped so many of you get your life back!!! It makes my heart very happy!!!
I am now 1 year and a month doing the protocol. It is worth trying it. Give it your all and see yourself coming out the other side better. Join this group for support for the protocol or just even to read other’s stories of how bad their em was, how they did the prototocol, etc. Meet Em sufferers who will answer your questions and help you along. None of us gain anything from you trying it. YOU are the one that may gain EVERYTHING. Ok, I confess. Every time I read a success story, I do gain something. I gain more happiness in my heart that I can explain because I know where I was in the chair and how EM took my entire life as I knew it from me, and now I see where I am and I know that one more person feels the same way. That is awesome! I don’t always come on here so if you need to reach me, you can always email to my public email ■■■■.
Facebook Group for Bob’s Protocol: https://www.facebook.com/groups/341524146368334/
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