Hello everyone !
I hope today brings a pain free day!
I posted Bob’s Protocol video of five of us giving testimonies etc. about it under EM treatment. I know there were a lot of you here that were waiting for the video.
All the Best,
Paula
Please can you let me know the details of Bob’s protocol as I missed seeing it when it first appeared. I am eager to try to reduce my pain before the summer arrives here in England. Thanks
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Here is the video:
and I would strongly suggest joining the group for support and to read about it and talk to others about it. Remember that you should send the video to your doctor and talk about it along with any other medical conditions and get his go ahead to try.
I wish you the best and if you have any questions along the way it would be easier if you do have facebook to message me on there.
Here is my awareness page:
search paula with erythromelalgia on facebook
How do you do today after the Protocol? How many percentage better, if I can ask? :slight_smile 
That video was just made. I’m up and walking and I wasn’t before . So much better now. I still flare etc. But not 24/7 and in chair.
Hi there! I did some research here on this protocol, although I did not watch the video. This seems to fall into the category of it can’t hurt to try it. That said, I found no solid research on this as a treatment with any scientific research behind it. Just something to keep in mind when you’re considering lifestyle treatments for your condition. At least this protocol doesn’t cost anything other than some time, and if it helps, well, that’s certainly a good thing.
Sharon
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Thanks 
May I ask how your symptoms was before the protocol? Big pain?
I have a quite mild EM, I flare with redness/enlarged veins, but no pain. And the protocol sounds incredible interesting to try out. But i am afraid that the protocl can worsen my symptoms.
Thats true, but join the “Erythromelaliga Bob with fire”-group on facebook, a group especially for members who have done/who currently are doing the protocol. Alot of people with tremendous results on the protocol, some actually got cured too. Sounds to good to be true.
Which means it probably is. Remember that reports on a forum are subjective and people aren’t always a good judge of the severity of their own condition. What one person might call a cure, another person might find unbearable. Scientific research provides a means of standardization that can be peer reviewed by other scientists.
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Bob’s protocol has been discussed here for quite a while. If you use the site search engine (click on the magnifying glass) and key in “Bob’s Protocol” you’ll get lots of hits. As CarterDK says, what people here say is subjective. As far as I’m concerned, as long as you run your intentions by your docs, as Sharon says, it probably doesn’t hurt to try. Whether the relief that people feel is real or placebo effect, who knows? And really, if it makes you feel better, who cares why it does?
Must have a look at that video soon.
Seenie
Can be, but if you visit different EM-groups on facebook, especially the “Fight with fire” one, group especially for ex protocol or current protocol members, then you will see that the sucessratio there is very high. More then 60-70% have got reduced the symptoms from doing it, so it surely works, and for someone it can actually be a cure.
Then there are a few one, who gets worse.
I’m not saying there isn’t improvement. However, what is the cause for the improvement?
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Does it come from the cessation of ice and cold water treatments?
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Does it come from the warm water treatments?
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Is it a placebo effect?
You’d have to have a well designed scientific experiment to account for all the potential variables in play and then have a standardized system of measurement to gauge improvement. As is, when people are self reporting there is going to be a wide range of what is acceptable or considered to be improvement. I suspect you, as someone who doesn’t even experience pain and only has superficial redness, would be dissatisfied with the level of improvement most are experiencing.
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The thing with Bob Protocol is that it works by “retraining” our nervous systems to respond normally to heat. Keeping our feet cold actually makes EM worse over time, like a rebound-effect.
See this story: Live With ME/CFS: Heat Desensitization - Erythromelalgia in Remission!
And search for Bob Barthelow.
Two of many who have gotten in remission.
You are all welcome to go my awareness and look at my pictures. I was severe. I was in a chair elevating for 24/7 for one and half years. No life. No going out except to doctors. Very bad and Dr. Oaklander said I was severe. I did the protocol. I won’t get into my details as I would just repeat what’s on the tape and what I said before. I can tell you that you should send to your doctor to let you know if it’s ok to try then try it. You have nothing to lose. If you have no pain and you are able to shower in hot shower and no pain than I don’t think that soaks will make you worse but I am not sure if they will help you. Only one way to know. Try it. If after seven days its worse, stop and get back to baseline. I know it seems to good to be true but I am here alive as proof and so are others. We have nothing to gain. We don’t get paid for this or any kickbacks of any kind. Everyone that tries it that it works for is just so happy that they just want you too to have the same kind of results. We know how much we suffer. We are in this together. I have sent the video to my doctor who said he is telling his patients about. A study should be done. That is another reason to send to your doctor. The more and more people this helps, a study would allow us to know why it helps some and not others. Do we all use it for one week before we stop? Do we have other medical problems that come into play? Do we all take away cooling methods? There is no way to tell when a person does it alone and then comes on and says it didn’t work. We just don’t know why and go on what they say they did. A controlled study is much more appropriate. Why won’t doctors do? Well it could be because business can be taken away, pharm meds no longer? I would hope that wouldn’t be the case but I see top doctors not seeming to listen to their severe patients coming in saying I do Bob’s protocol and they just shake their head and say I heard of it. I do believe the cooling methods make us worse. We get stuck in rebound pain and flare. It’s what we want to cool off. Actually my doctor originally suggested ac fan etc. wrong !!! no!!! I can say I still flare. I am up and walking. I have not sat in that stupid elevation chair in one year and almost 5 months !! Yippee!!! I didn’t realize it was that long. I sleep better. I can do daily chores now. I can drive. I can go out to stores. Don’t get wrong, I am not like a “normal” person. I still have many problems with health and my flares still happen. Just not 24/7 and most of day not a lot. When I flare it is not as painful,no where near as burning, not as many pins…so much better thuat is all I can tell you. If someone stepped in my body right now they would not be able to handle it, because to them it would be bad. To me coming from severe, in this body now, much better to live my life. I do think it retrains the body to come back on its own to the right temp. and trains it for pain control. All I can say, is look at me, I am real. It worked for me. Not a cure. But very very helpful. I hope that it can help all of you get some of your life back. That would truly make my heart happy 
The thing with Bob Protocol is that it works by “retraining” our nervous systems to respond normally to heat.
That’s an unproven hypothesis. It’s unknown where the benefit comes from. It could simply be that stopping ice application and cold water submersion is beneficial.
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I involved myself in this discussion again to simply back up a fellow moderator who pointed out that the therapy known as “Bob’s protocol” has no scientific evidence to back it up. If you search for “erythromelalgia heat desensitization” on PubMed, the US National Library of Medicine for the National Institutes of Health, it returns zero search results. There hasn’t been a single scientific paper written about heat desensitization as therapy for erythromelalgia.
That’s not to say the protocol doesn’t provide benefit. It seems fairly clear from reading and listening to testimonials that it does provide benefit for some people. We simply don’t know where that benefit comes from. In most cases improvement does seem marginal. My hypothesis is that most of the benefit from the protocol comes from simply stopping ice application, cold water submersion, elevation, and fans. I’m skeptical that heat desensitization itself provides benefit.
I watched your video a few months back and found you to be an intelligent, articulate spokesperson for not only Bob’s protocol, but erythromelalgia in general. I’m glad that you have seen improvement.
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I can tell you this …I stopped the protocol and don’t use cooling methods…when I skip a day a little worse but can handle …when I skip two days …a little worse …by day three or four …forget it …back on protocol. Ive tried myself to see if I stopped the soaks what would happen. I tried this three separate times through out the past year. It’s a no go. You stop the water soak you get worse.
This is why we need a study on it. Once we know why it works etc I’m sure they can come up with even a better or different way. We are all just guessing here as we aren’t doctor’s. I don’t have the answers. I just know that if I am better and if I stop I get worse. I should say my tolerance has improved too. Such as I was at 63 degrees now I’m at 65 woohoo!!! I can be on 70 w light fan away from me . But not in sun of course. It’s allowed me to be able to attend a few functions and things outside the home which is fantastic. I hope that one day a research doc can study it and make it clear to us all.
That still sounds like severe disability, which is how I felt after watching the video you produced too. With the exception of Bob himself, I didn’t think the testimonials were necessarily persuasive. I’m not certain that if you could package these results in a pill, and tried to win approval for it at the FDA, that you could convince the panel the results are statistically different enough from placebo to gain approval to sell it. The improvement is marginal. A 65 degree tolerance is still 3 degrees below the ambient temperature at which the human body begins to lose heat from exposed skin. The treatment hasn’t even brought you back to a normal baseline for cold exposure, much less increased your tolerance for heat.
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I also have other medical problems that complicate my situation. But I would rather do water then take a pill. I’m so sensitive to everything. No medication has helped me at all. It all made me worse or I had side effects. Right now my house temp is 70 and I have my ceiling fan on. I feel a little hot but I decided beginning spring I would try to go a little further with temp if I could. As my ac bill in summer is high. But without a breeze in 70 I’m not comfortable. I may flare little. I also flare in hands. I take hot steamy showers now. The way I was before …was not living …I am living now. Yes with disabilities but I am able to enjoy things more like my grandchildren playing w them, going to a store and actually make it through shopping, go to lunch and be ok in restaurant. I used to carry my fan everywhere and need it everywhere . I still bring it bit I don’t need it all the time. I do pt and I don’t need it there. I am happy where I am at because I know where I came from and I never want to go back to that again. But yes I could be much better and desire that much more !!! I’ll see how this goes into summer if I can somehow train my body to like 70 without fan then I could do 72 w fan. I miss the outdoors most. I was a hiker, boating, fishing, beaches, etc. Now summer is spring and fall and living in New England it usually gets cut shorter each year it seems. If we all work tomorrow together and make noise that we need help, it might just work.
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rayofhope - I am so pleased to read your improvement. I understand that any increase in quality of life is a reason to celebrate. It sounds like you have gained much more than what is said in a 63->65 deg tolerance, per se. It is tough to scientifically measure a drug’s success but one reasonable measure I think is “time to discontinuation” (due to side effects or lack of efficacy) and it says something that on separate occasions, you’ve learned you would prefer not to stop soaking. Although it’s not a cure I hope you can make further gains + let us know either way.