EM treatment "Bob's protocol"

General
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HI everyone !

I’m not sure if you have heard of “Bob’s protocol” and if you have not I suggest that you join facebook private forums for Em and on the search bar search “Bob’s protocol” so that you can read other patient’s stories about this and Bob who has EM who came up with this.

His protocol that he has tried he says has cured him. Others have tried it and it has helped tremendously and so after following stories for months, I decided to give it a try.

Basically, it’s soaking your EM extremities into warm water and then gradually making that water hotter and hotter as you go on. Yup. You heard me! Why on earth would we want to put our flared parts in warm or hot water when the heat sets it off? I decided to due to the stories of success I would try for one week and even if painful and in more agony which for me that was impossible, I would give it one week. So, I told my husband except the worst and don’t expect much of me for one week.

I started with putting in warm water 20 minutes a day and take away all your cooling sources…fans… yup take away the fans…cooling packs, yup those too. How on earth could I survive? I was literally hooked to a fan blowing on my flared red swollen feet all day and night. Stuck in 63 degrees temp. I am considered severe my EM. You are welcome to search me on FB Paula with Erythromelalgia and or Paula Corey and you will see how bad my flares are and the are non stop meaning no breaks.

So I soaked in warm water 20 min a day. Did it hurt ? Yes. Did I get swollen? Absolutely. Did it burn? Yes. I elevated the first two days and decided not to elevate and just sit in a recliner. I was using a zero gravity chair. No fans but I cheated the first few days only using almost an hour at night. I had so many pins and needles but everyone who tried this said to stick with it as those too would get better. I didn’t think it would work for me as I am so bad and that did make worse somewhat.

After three days, no more fans. I did not use cooling packs. I did not elevate, just normal recliner. I started to see normal color in my feet ! I couldn’t believe it and can’t explain it at all. Treat fire with fire? Yup.

Some have tried and either they say it didn’t work or they gave up after a few days. I told myself suffer…for a week…if it means a better quality of life. I stuck to my plan and guess what?

After one and half weeks I put my fans in the closet and said goodbye fan! I no longer use cool packs. I elevate before bed in bed for about an hour and early morning hours.

I used to flare after every meal. No matter what I ate. I should say the flare would get worse as I was always red and hot burning. Now I eat and nothing gets worse.

Do I still flare? Yes. But I see normal color a lot now while in the recliner and I have not seen that in over one year.

Do I still burn? Yes. But not half as bad and I still see red but I don’t get that hot hot hot I’m on fire and need to stick my foot fast on something cold feeling.

It’s a miracle. My quality of life is better.

I am in Mass so here it is winter and I am not sure what will happen in the summer. I had severe difficulty going out. I felt sick, I would get red flushing on my arms, feel like passing out with no air, and veins bulge and immediate flare. I am curious to see what will happen.

While I soak my veins bulge. I am on four weeks now and I do this every day no matter what and I follow it up with a hot steaming shower ! Yes you heard right. This coming from the girl that sat in a chair with feet elevated and only fast touching warm water on the bottom of shower. I enjoy a steam shower now for almost ten minutes so I soak about 30 minutes a day.

I listen to Charles Stanley during the soaking to keep my mind off the pain and burning and pricks. But it has gotten better and more bearable. I let it come back on it’s own. That’s the key. Let your body bring you out of the flare with no fan or cooling packs. It does happen. It never did before.

Feel free to message me if you want for more information or inspiration.

I do truly believe that this is worth a shot for everyone ! Will it cure you? Maybe Bob says it did him. Maybe if you don’t have it severe it will cure you.

I will be bringing this evidence to the researchers soon in the future.

What if all along we are treating this wrong? Then we are sending our bodies into a cold rebound effect and destroying ourselves even more by using ac, fans, cool packs, cool water soaks, etc.? Did I make myself so severe by elevating and doing all this to treat myself? I don’t have those answers but what I can tell you is that I am living proof that it has made my quality of life better. Not cured. Better. I will take better because my quality of life was bad.

Good luck and I hope that you will consider doing this. No pills. Easy to do. Just need to get through the first few days and then it gets easier and easier and once you see improvement, you will want to continue just like me.

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Dear Paula, you truly are a warrior princess. I just don’t know if I’m that brave. My palms are burning right now. Patricia

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Hi Paula,

I am so happy to hear of your improvement! Would you be able to try putting a direct link to the protocol you mentioned that is on FB? I joined the FB group and found plenty of commentary but could not seem to find the original post with the detailed instructions.

Thank you!

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Wow Paula,

That is amazing. I am so very happy for you! My daughter has EM in her hands, feet, face and ears. I will for sure share this with her but know that it would not work for her face and ears.

Thanks for sharing. :slight_smile:

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Yes you can do it ! It’s worth a try right? You won’t know until you dedicate yourself to try it. What if it works? Think of that.

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I have read others saying that they shower and put the warm water on their face and ears and others a warm towel. Some said when their face flares they warm it up to stop the flare.

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It is pinned at the top of the site. If you still can’t find it let me know.

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Thanks for that info. I am not sure she can do that because of the blistering that happens with flares. I appreciate you sharing. :slight_smile:

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Hi rayofhope,

Thank you for posting. This is very interesting! I was wondering if you had ever tried calcium channel blockers or anything else that is a “vasodilator” and how ‘Bob’s Protocol’ might compare to that.

I’m very glad you are getting some quality of life back :slight_smile:

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My Naturopath has me doing “hydrotherapy”. First either take a hot shower, or hot tub for 5 minutes or more, then immediately wrap your torso in a cold water soaked bath towel, lay down and cover yourself with a blanket. Lay there until the cold towel no longer feels cold… 15 to 20 minutes. I must say, one has to have an iron constitution to do this to oneself. But immediately after the “treatments”, I feel like I have a normal body AND normal stable body temperature. Unfortunately, it only lasts until I engage in activity or eat. But it gives me a glimmer of hope.

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Hi Rayofhope,

Thank you for sharing! How wonderful that this treatment has done such an amazing thing for you! :slight_smile: It sounds a lot like the ‘hot water bottle’ treatment that Carine Prevot has written about 2 years ago. First I couldn’t believe that her relief really was based on such a treatment…

But with your story I must change my mind!
My EM is in my feet and even severe as yours is sounding. (or was :wink:
It sounds like a nightmare to put my feet in hot water. But now I will try and hold on for at least one week, like you did. I will come up with my experience soon… fingers crossed :))

thanks!

Vlinder

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I tried this with out knowing it was a thing, gradually made my symptoms worse.

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There is a group on facebook for parents with children of Em and I would suggest joining and talking to other parents that have children suffering and see if there is anything they are doing that helps the little ones. It can’t hurt. If there are blisters I know with rashes warm water makes worse. I am not sure about the blisters.

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I have and they made my em worse. Actually no medication has helped me at all and some have made me worse.

If you are on medication, I would stay on everything if doing the protocol so that you can know if it is working or not.

I am not sure the reasoning why this protocol works. It is as if you are retraining your system maybe?

I think the cooling methods can be hurting us and making us worse. It’s just my thought. Except it has worked wonders for many and it’s a simple thing to do. You just have to get through the first few days of it and even a week, and it does get easier and once you start seeing a difference, it keeps you doing it.

I was so severe and life is much better after doing it.

Join fb groups too. Don’t leave from here but join FB as well and read the stories until you are comfortable doing it. It took me three months to try to it. I was petrified of doing it. But I am so glad others encouraged me to do it.

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I am really wondering here if you aren’t getting the full benefit because you are using that cooling method.

What about giving this a try and taking away the cooling method completely. With this protocol, you take away the fans and let your body come back normal. So I think the cooling method you are doing may be backfiring.

Worth a try ! Everything is. What’s the worse that can happen? After a week you feel it did nothing. Or…after a week you feel major improvements?

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Would you happen to know where what she tried is?

Definitely give it a shot !

Let me know how you do. Remember, take away the fans ! Cheat if you must the first few days but not much.

Good luck !

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It will get worse and feel worse until well for me it was three days then it got better…I would give it one week, no fans or cooling methods. Also to read on fb the stories and what others went through might help. I know for some it didn’t work but I am not sure if they tried a full week or gave up. I almost gave up. But, everyone on fb said keep going don’t give up ! So I didn’t and I am so glad that I didn’t. You have to judge for yourself and do what you think is right though for you.

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Hi, thanks, I will. But first I have to collect a lot of courage. The pain that I now have is bringing me to tears without a fan. So when it will worsen I can’t sleep anymore. Not sure how to handle that when I’m on this new protocol.

And yes, Carine Prevot has written a book about it, but the short version of her protocol with the hot water bottle, you can find on this website. Search for ‘Carine Prevot’. She has tried a lot of things, but this has done the trick for her. Maybe her treatment is even better for people with blisters :slight_smile: But that’s a thing to try with caution.

Vlinder

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I did that for two weeks at first. Sit in a hot tub for as long as I could stand it, then get out and cool off naturally. Made things worse, unfortunately.

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I so know what you are talking about. My entire day and I am not kidding I had to elevate due to swelling and redness and burning and on fire all day long and I had a fan under feet shooting in an upward position. I also had a fan at the edge of my bed all night long directly on my feet. When I left for appts I had my ac blowing on my feet and in the winter time here even at below zero I had ac on my feet ! Also at the doctors office I brought a cooler with cooling packs and a portable fan.

This has been my life for over one year non stop.

But after doing this, no more fans. Horray ! No more elevating.

It definitely helps to read the stories of those that have also tried it on fb. It gives you the courage to try it as you see pictures of the before and after and read the stories knowing that are people just like us and you see and hear their success.

It’s not easy to do at first but it does get better you just have to keep telling yourself that and not give in. Encouragement from others helps. I reported daily what I was going through on the same post on fb and others told me keep going, it’s normal that’s what happened to them so I would continue with that encouragement.

When you are ready, you will do it. It took me about three months of keep reading the stories. At first, I thought yeah ok no way can I ever do this and use no fan. No way can I ever put my feet in warm or hot water, no way no way no way!

But the encouragement of others I gave in.