I know that Bob believes his protocol works because the process desensitizes the nerves to better tolerate heat but I’ve always been skeptical about this. However, I never had any doubts that it DOES work after witnessing my own feet improving in resilience, color, and feel after just a short time. I started the protocol a few years ago, however my improvements stalled after a few months and saw no further improvements until the breakthrough this year!. During my time at the plateau, I wasn’t using kneepads full time anymore to prevent flares but I was still using them consistently through out the day because sustained mechanical forces on the bottom of my feet would eventually trigger discolorations and burns that were so bad even the protocol could no longer alleviate symptoms until I completely stayed off my feet for a time. I next tried high doses of magnesium which started off promising but quickly hit its own plateau.
Some time ago my sister suggested that if warm water worked on my feet, I should look into getting an infrared heating pad since it would be much more efficient in applying heat because infrared can penetrate the surface to affect the deeper tissue layers. That logic made a lot of sense to me and I was very excited thinking about how my feet might respond to it. I got one from amazon, laid it on the floor and instead of sticking my feet in warm bath for a week, I placed them on the heating pad and wrapped them up for about the same amount of time i’d do with the warm baths, which was about an hour a day. After a week, I was very disappointed and discouraged. My feet had responded to the heating pad worst than the warm baths. The discoloration became worst and it was easier to trigger flares. Defeated, I went back to soaking in the warm baths.
After I packed the infrared heating pad away, I seriously considered sending it back for a full refund but for whatever odd reason, I decided to keep it. That decision ended up changing my life again, the first time being when i lost the ability to walk. Fast forward to February of 2023. I had been researching on and off, into this disease for several years at this point. One day I stumbled upon some interesting research I had not previously seen, and because of that information, I immediately adjusted the way I was applying heat to my feet. I took the infrared heating pad back out, dusted them off and put them to use again setting the temp to 106. However, this time I CHANGED MY POSITIONING. Instead of sitting down while my feet were being treated, I laid down on my back and placed pillows underneath my feet making sure that they were elevated above the heart. I did this for about the same amount of time as before, an hour a day. After just a few days, everything was noticibly improved across the board, including the color, the amount of time I could stay on my feet, and the resistance to flaring. 2 to 3 weeks later, I’d use my kneepads for the very last time! It’s been several months now and I’m walking full time!! no kneepads!! no flares!! I do consider myself in remission! The only symptom left over is some cyanosis when my feet are in the cold. I am still in disbelief at how changing my positioning made such a DRASTIC difference! I remind you I was stuck at a plateau for a couple years using the protocol in a similar way Bob was using it.
Here’s my summary of the information that caused me to adjust the protocol. There is a contradictory thing that happens during a flare where there is an increase in blood flow to the region AND YET… the tissues in the affected area have low oxygenation levels! At first glance, this makes no sense. How can there be more blood flow to a region and at the same time the tissues (especially the skin layers) there are starving for oxygen? The problem lies in the “gates” between the arteries and the capillairies. Possibly due to damaged nerves, these pre-capillary sphincters don’t operate correctly and obstruct good blood flow into the capillaries, meaning most of the blood circulates through the feet and back to the heart without having their much needed nutrients being distributed to the tissues at the microvascular level. This is how you get both an increase in blood flow AND low oxygen levels in the affected tissues.
This is only a hypothesis but if our tissues are already severly hypoxic, no wonder icing and the cold creates a nasty rebound effect! And no wonder a lot of us have our worst flares during the winter! The cold makes circulation at the extremities even more difficult than normal and if your feet are already starving for nutrients, a dangerous thing can happen where icing the tissues can possibly worsen the condition while simultaneously giving you relief! The flares and inflammation just might be your body’s way of trying to heal and respond to hypoxic tissues. Imagine if the conventional wisdom of using cold and ice to gain relief, is actually HURTING us. Yikes!
I believe Bob’s protocol works, not by desensitizing the nerves to heat, but by triggering those pre-capillary sphincters to open up through heat, which allows better blood flow at the microvascular level. I adjusted my positioning because I wanted to “supercharge” the microvascular circulation of my feet by minimizing gravity’s effect on it. It changed my life! This can be done without a heating pad but I use it for convenience because it’s harder for me elevate the feet while in a warm bath. I also do think that infrared is a more efficient way to trigger better circulation.
Of course, I’m not suggesting all erythromelalgia is the same and yours may not be caused by low oxygen levels. I’d suggest covering all your bases and talking to your doctor or a medical professional before trying the protocol or my adjustments to it. I just wanted to share my experiences of how I achieved a MASSIVE breakthrough and I’m very grateful to Bob for sharing his method and also to Paula because without her youtube videos I may not have ever known about the protocol. I’m hoping that maybe a few people out there might be able to mine some gold from my story and possibly have their own breakthroughs especially if they are stuck at a protocol plateau! All the best!!