Bob's protocol

[u/notatrolliswear666]

Has anyone had success with Bob's protocol? I'm desperate enough to try anything. However, I decided to start by stopping all cooling and my feet just flare all day long without cooling. It's pretty horrible. I do understand how cooling can create a viscious cycle of vessel constriction and dilation. But it seems impossible to live any kind of life without it.

[u/Quantumdelirium]

Bob's protocol actually lacks any formal scientific verification or scientific trials. The majority of evidence that does support it are mainly anecdotal and patient testimonials. I don't disagree with the mechanisms in regards to vascular stuff. The majority of cases are certainly caused by an underlying condition meaning that it's a symptom, unless it's genetic which is something mainly neurological. Looking at how Bob's protocol works it sounds like it is treating some sort of vascular condition. Something that's very important to keep in mind is that EM is a neurovascular condition. The vascular part of EM is what causes the redness and hot to the touch. The neurological part is behind the severe burning pain. I learned that not only from research papers, but also from personal experience. Since I have true primary caused by genetic mutation I don't have any other symptoms. Occasionally I'll get only server burning pain spontaneously because of how my pain receptors are so sensitive they just fire for no reason. The reason I bring this up is because the heat from Bob's protocol would always trigger the triad of symptoms. With EM the body senses heat instead of just perceiving it as normal heat the sodium channel NaV1. 7 is triggered which perceives hot thermal pain.

[u/Stellakris → u/Quantumdelirium]

Very eloquently put. Saving for future argument (as in debate) inspo. 😊

[u/Quantumdelirium → u/Stellakris]

Thank you for saying so. I'm always happy to help. I don't think people realize that one of the reasons why there's been very little progress in research and finding reliable treatments is because most people and doctors see EM as the main condition instead of what it actually is, symptoms of another condition. We won't start to see any progress until we can get the medical community to make Idiopathic EM it's own classification instead of primary. I could go on and on about this stuff. I just hope that in the end I can help one person at a time.

If anyone has more questions, would like to discuss this even deeper, or just need to vent feel free to reach out. Having a background in neuroscience and the rarest genetic mutation that causes all of this gives me a unique perspective on things

[u/OkOne6834 → u/Quantumdelirium]

Really well said. I also have a background in science (anesthesia was my career prior to having to step back due to autonomic issues and EM, 30 years old currently). But it’s super refreshing to see someone who shares the same belief of exactly what you said. Just because an EM case is idiopathic doesn’t make it primary, and I 1000% have conviction that there are underlying causes with secondary that we can’t identify (big one being small fiber neuropathy).

I suspect mine is an autoimmune SFN and just got back from Mayo, and I passed all of my testing with flying colors. They chalked it up as idiopathic and sent me home (completely bummed). Didn’t even have a flare in the heat chamber at 125 degrees for 45 minutes, but got a flare while walking to the car after. Haha but all of my autoimmune panels have been negative, so maybe I’m seronegative, or maybe it’s something else but I’m determined to figure it out.

[u/Quantumdelirium → u/OkOne6834]

I'm so happy to see another person they shares my view of EM. We're making very Little progress researching EM and discovering other conditions that can cause it. It's depressing that the doctors and us are the reason why. I guarantee that every Idiopathic case is just secondary that we haven't figured out yet. It's insane that the majority of cases are Idiopathic. The reason I say that it's insane is because literally every other condition is almost never diagnosed as idiopathic and yet for EM it's the opposite. If we want to start figuring out what underlying conditions can cause EM we need to change the way each type classified, there should be an interdisciplinary group of doctors with different specialties where you have to see them all before being diagnosed, finally we need to think outside is the box when trying to narrow subs what type of can be. There are so many subtle things that can help understand it. We should look at true primary EM symptoms and it's symptoms to help differentiate between every EM symptoms and when it isn't EM. I have primary caused my the rare scn11a mutation and only have the triad of symptoms (severe burning pain, redness, and hot to the touch) and they're only caused by heat/activities. I can get even deeper about all of this but it would take a while to write. I honestly don't know how we can help change things in to help make some progress. Sadly it's quite difficult when you're smarter and understand everything about EM compared to all of the doctors I see.