Bob Bartholomew's Protocol

Symptoms and Treatments Complementary Therapies
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From Paula:

Bob Bartholomew’s Protocol

I was able to put my Erythromelalgia in remission! You’ll find below a description of how I did it, but in the interest of being thorough, allow me to disclose that I’m 39 and in perfect health otherwise. For most of my adult life I have eaten a natural, whole foods diet and have exercised multiple days per week. My body fat is under 10% and my resting heart rate is in the 40s. My blood work is so good that it makes my doctor’s toes curl. I don’t say this to discourage those with other conditions from trying what I describe below, but only to temper feelings of despair if the treatment described here doesn’t work for you in the presence of multiple health problems causing or otherwise attending your EM. I’m probably the ideal subject for such a treatment, but I have definitely heard of cases of similar plans working for those with EM secondary to some other condition. That said, I sincerely think everyone should try this as it seems to me to be safe, without any likely long term negative consequences. Of course, I’m not a physician, and so you might run this by your own healthcare team before attempting it, especially if you have myriad conditions attending your EM.
What I did:

  1. On 3/18/17, I stopped putting my feet under fans and/or in cool water to stop flares. Instead, every night before taking a hot shower, I put my feet in two buckets of warm water for thirty minutes, after which I took a hot shower. For the first month of treatment, I used water around 97-100 degrees; after the first month, I gradually raised the temperature weekly until the water in the buckets was 109-110.
  2. After the hot shower, making sure my apartment was at around 76-80 degrees, I forced my body to recover on its own without any aid whatsoever. I lied down on the bed until the flare was gone and then applied copious amounts of lotion. At first, the flares took hours to subside; now, I don’t flare any more than a “normal” person.
  3. At about the 7 week mark, I added 30-40 minute walks midday with socks and tennis shoes on. After the walks, I kept my socks on and forced my feet to recover.
    Don’t get discouraged if you don’t see results after the first few treatments–give it a week before quitting. Slowly, day after day, if you’re like me, you’ll see improvement.
    There are likely many “right” ways to do this sort of heat desensitization, so feel free to "make it your own."
    As of 1/19/18, I no longer flare, and I can wear normal footwear in all conditions. The greatest improvement came within the first 4-5 months of performing the steps outlined above. This treatment seems to reset the body’s interpretation of heat so that when you are engaged in “normal” living, your body doesn’t overreact to normal heat/friction/use. The key is to do this treatment every day—make it a part of your daily routine.
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After speaking with Bob, this is the protocol that will be circulating the forums.

I have done this and have seen much improvements as I said before.

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Rayofhope - endless thanks to you for your initial post about this protocol on Jan 10. After much contemplation, I began the protocol on Jan 16. I absolutely cannot believe it, but it is working. It is remarkable. I had planned to wait for a month before posting about it, but I decided against waiting hoping that my story might encourage others as your story encouraged me.

On Jan 16, I went all in and put away all of the fans, ice packs, cooling pads, etc. I have used no cooling methods since then. I increased the temperature in our house from 65 to 69. I have significantly decreased the amount of time I use elevation. I had been avoiding having my feet in the dependent position as much as possible, but now I sit normally most of the time with my feet down.

I have been doing hot soaks twice a day - morning and evening - for 30 min each time. Currently, I have the water temp around 110F. I follow the soaks with a 3 min hot shower.

I allow my feet to come out of flares on their own - again, no cooling. At first, it took quite a while for them to calm down, but they seem to be responding more quickly as the days go by. If my feet become too cool, I put on socks (yes, socks - unbelievable).

I still sleep with my feet out of the covers, they still get too warm under. However, they have calmed down so much at night that I am sleeping so much more soundly. No fan, no cooling pads - amazing.

I’ve noticed the past few days at the gym that my feet aren’t getting as aggravated - the flaring is definitely less bothersome.

I am trying to remain objective and skeptical about all of this, but I cannot deny the improvements. My skin color is better, the flaring is less painful, and it is wonderful to not have to constantly manage fans, ice packs, A/C, etc. I feel a tiny bit closer to normal again. I definitely still flare with activity at this point, but it is so much better. I plan on continuing this protocol indefinitely.

Thank you again so much for spreading the news to others!
All the best :slight_smile:

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Rayofhope: thanks! And nwgirl; your post certainly encourages me to start with this protocol :slight_smile: I have a few appointments this month, so I will start begin february… My EM is very severe, like Rayofhope had, so I will go through hell while doing it. Nowadays I have trouble falling asleep even with a fan and in wintertime… So I don’t know how to survive the first week on this protocol… I will keep you all updated :wink:

Thanks!

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Not might, Bob, but should!

We always recommend keeping your doctors in the loop, whether they prescribed the treatment or not.

Seenie

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That is such wonderful news ! I am so happy to hear all that! It is amazing. I do think we are hurting ourselves by cooling like we want to. Something so simple as soaking bringing much improvement is great. Keep up the good work and I hope you continue to see even more improvements too !

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It wasn’t something I could not handle and I told myself that I would only give it one week and if it didn’t work then I would stop knowing at least I tried that. The first three days were the worst and pins and needles until I stopped elevating. It gets better. Everyone told me don’t stop that they felt the same thing and encouraged me to continue on. So I did. I took benedryl the first few nights to help me be groggy at night. I listed to Charles Stanley from Intouch while I soaked to concentrate on something else other than the burning. After about 5 days the soaking became more bearable. I still flare of course in the water and feel burning but I know the results are worth it. You can do it ! Just do at your own temp very slowly. Start off with luke warm water and then go up from there as you feel you can. I think I made the water too hot the first few days and others told me to make it cooler and I did and did better with that. Now depending on how bad my flare is I start with either luke warm and increase after a few minutes to get it warmer and warmer. I sit in the tub on a chair and put my feet in bucket refreshing the water. But I went slow the first week and only did what I could do. I cheated with the fan less than an hour a few times and tried my best not too. I was determined and so glad I was. Life is better. I am not cured, but it better than what I was.

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Yes everyone should check with their doctors especially if you have other medical conditions and Bob does encourage that.

I checked with mine and they said it is like physical therapy. Putting your parts in warm water and increase as you feel you can and see if it helps, etc. At first, I thought this isn’t working I don’t know if I can do this ! But after a few days for the first time I saw normal color in my feet. I haven’t seen normal color in over one year. I was in constant flare. Great improvements for me.

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Thanks so much rayofhope - best wishes for continued improvement to you too!

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Vlinder - I am so glad I could give some encouragement to you! All the best :slight_smile:

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Yes - definitely run it by your physician - I did and he wholeheartedly told me to go for it :slight_smile:

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Thanks, all! I started this protocol just over a week ago. I’m able to get through most days in shoes with no flares! It’s not gone by any means, but the improvement is undeniable.

I can’t tell you the last meal (lunch or dinner) that I didn’t flare. Today is the first time in 5 days I slightly flared in the evening. I went 5 straight days in which I didn’t flare while eating. I had a very stressful day today, so I’m sure that didn’t help. :blush:

If any of you try it, please let us know how you are doing. Definitely worth spreading the word!!

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How encouraging this thread is! Even if it doesn’t work for everyone, it sounds like it’s worth a try. Even better, it’s (almost) free: no shelling out for supplements or snake oil!

Once again, the amazing power of the internet to support and help people! Thanks, Bob, for posting.

Seenie

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For those that this is working, do you consider yourself dilator or vaso-constrictive? Did magnesium help or hurt you for instance? I’m wondering if this works for both or just one or the other? Magnesium turned me into a tomato, but it’s helped Dr. Cohen and others.

I broke my leg 2 weeks ago, so I can’t try this until my ankle heals. I can’t have extra swelling in that area for a couple more weeks as right now I’m icing the ankle few times a day to keep swelling down.

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BTW, don’t ever break an ankle. That foot has been terrible since compared to my other one. I assume it’s the swelling has changed the way blood flows in and out of the periphery. Also maybe other chemicals that come to the site of the break. Anyway, pray I get back to normal soon. The EM changes are much worse than the break itself.

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I don’t want to be a debbie downer, but i’m skeptical simply exposing oneself to hot water can cure erythromelalgia. I think avoiding excessive cooling can definitely improve symptoms, but the “c” word is where I become skeptical.

Because my EM is well controlled by medication, I am able to regularly expose myself to elevated temperatures. I take long hot showers, exercise vigorously, sleep under the covers at night, and largely wear the clothing I desire. I’ve even spent hours cleaning an un-air conditioned garage when it was 100 degrees outside. I rarely ever use cooling methods. Essentially, I am able to live a relatively normal life. That said, I still have erythromelalgia. When I exit a hot shower, my feet and legs look ridiculous. They are not exceptionally painful, in fact I barely feel it at all, but they are certainly not normal.

If simply exposing oneself to heat was enough to cure EM, I shouldn’t have it anymore.

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Carter, if you aren’t getting pain count yourself blessed. When my feet go off, pain is at level 10. I’ve broken bones, had surgeries, and nothing quite compares to a full on EM flare. Not doubting you have EM, just your pain symptoms are light. My ankle break is just an inconvenience, but no big deal. The increase in EM on that foot has been much much worse than the break itself.

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CarterDK - It’s wonderful that you’ve found a medication that allows you to do all of the things you want to do! I understand your skepticism with the word “cure”. My understanding from reading comments on the FB group page is that the hot water therapy is an ongoing treatment. The idea is that it retrains your nerves to remember what is actually hot and what is not by soaking in very hot water. If it was a cure, the hot water soaks would no longer be necessary. I believe even the original FB poster, Bob, still does the soaks and hot showers to maintain the improvements he experienced.

When I saw rayofhope’s post on this forum, I was skeptical but figured it was worth a shot. Nothing else has worked for me. I did run it by my doctor who said to give it a try. All I can tell you is that doing these hot soaks and taking away all cooling has helped tremendously. I can hardly believe that something I initially thought was so far-fetched has made such a difference. I hope that I continue to see improvements, but even if I just stay where I’m at now, I will be thrilled. I haven’t had a flare while sleeping all week - and that is w/o using fans, cooling pads, etc. Today when I got home from the gym, my feet were pretty close to normal color and not swollen - usually they’re bright red and all puffed up. Both my husband and I are incredulous that this is actually working - I don’t really understand it but I am very thankful.

I hope others feel encouraged to check with their doctors about giving it a try - I am so grateful to rayofhope for posting about it on this forum.

gwadley - I’m not really sure which I am. Magnesium caused flares to be worse for me.

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I’m so glad for those who got relief by doing this :slight_smile: Honestly when I read about anyone’s improvement it gives me hope so thank you for sharing.

Carter - Just adding to what nwgirl said, I think we have to be careful to compare results from the same thing only. I too am fortunate to be able to exercise – first thing nearly every morning, when I am sorta stable. My body has never gotten used to it, and I always am somewhat worse for it the rest of the morning (but to me it is worth it). Another thing - we could take the idea of {getting more tolerant to stimuli} to the extreme, and say that eventually, my body will eventually get acclimated to the evening temp (or whatever it is in the evening that causes me to flare). Ie, symptoms will just burn themselves out. I don’t think this really happens though.

That said, I still think there aren’t enough data points here. Like you suggest elsewhere - there are probably so many different “subtypes” or “subphenotypes” of EM and no one responds the same to the same treatment as of yet …

One last thing - I think another thing that might be at play is the mental game here with Bob’s protocol. Just an idea. But being scared to subject yourself to such a stimulus, and doing it anyway, and knowing you survived – well I can imagine that takes power away from the centralized pain loops. But who cares exactly why if it helps some ppl, right? :slight_smile:

What I like about the “bob’s protocol” idea is that there aren’t any nasty sedation side effects that come with heavy drugs… I’m still working up to trying something like it but thanks to everyone for posting here.

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Pain scales are very subjective. We may just rank differently.

Are your EM flares the worst pain you think you could ever experience or the worst pain you have ever experienced? For instance, if you stepped on a land mine and your leg was blown off, would you likely rank that pain the same or below an EM flare or would you readjust the scale? I’ve never experienced any pain I thought I needed morphine for, so I don’t think I’ve ever experienced pain from any cause above a 7 or 8. I’ve never given any pain I’ve experienced a rating of 10.

Without medication, I wouldn’t have ranked my EM symptoms above a 4 or 5 at worst. With medication, it doesn’t rank above a 1.