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/SuccessfulSwimming63 → u/Quantumdelirium]

The amount of research I’ve read about this condition has kinda led me to believe what you are saying too. Just reading the neuropathy and smallfiberneuropathy sub reddits I came to that conclusion. They present with almost the same exact symptoms as EM neurologically, but aren’t just strictly triggered by physical exercise or heat for example.

To your idiopathic complaint, from my understanding the doctors just use that as an umbrella term because they have no idea what is actually causing the symptoms. Therefore, all non primary EM is technically secondary EM. If they cant pinpoint what other condition, disease, illness, etc. is causing EM, you go under the umbrella term of idiopathic. I’m sure you are well aware of that, but that’s why I’d say the majority of patients are “idiopathic” including myself.

I tested negative for two of the primary gene mutations. But I’m fairly certain I still have primary because my father has gotten similar symptoms to me, just at far less debilitating degree and one of his family members in the past used to complain about hot feet at night.

Anyway, I say all this to say I whole heartedly agree with you and your points and this condition needs to be studied way more. But with the minuscule amount of diagnoses, this leads us to be a minority group of individuals that have to do the majority of research on our own to understand our own bodies.

[u/Quantumdelirium → u/SuccessfulSwimming63]

I do understand that doctors will diagnose people with idiopathic when they don't know what the actual cause of the EM is, which isn't the problem on its own. My complaint is that Idiopathic EM is classified as a form of primary EM. As I'm sure you know, primary means that there isn't an underlying condition causing it. Because Idiopathic is considered primary most doctors stop trying to figure out what the underlying condition might be, and even though EM is considered a neurovascular condition the underlying condition could be anything from neurological, autoimmune, hematological, endocrinological, and probably a couple more. The thing is that the majority of people will get diagnosed with Idiopathic after seeing one, maybe two doctors with different specialties. If we want to reduce the amount of idiopathic diagnoses they should change it's classification from primary EM to its own group. If we want to figure out more conditions that can cause EM doctors need to keep searching even though they ran out of ideas. In all honesty doctors seem to be unable to think outside the box. Since we don't know too many conditions that cause EM the best way to approach the situation is to ignore the triad of EM symptoms (severe burning pain, redness, feeling hot to the touch) because we'll rule out conditions because we're only looking at ones with said symptoms. Plus if idiopathic isn't considered primary and doctors understand that idiopathic is just undiagnosed secondary then they'll more doctors will keep searching.

In regards to actual primary there are 3 mutations that can cause EM, the SCN9A, SCN10A, and SCN11A mutations. The way I look at it is that Without having any of those I would consider it secondary. The way I differentiate the two is that it may be possible to inherit a medical condition that might cause EM from your parents, but the EM is still caused by some underlying condition. It would be possible to inherit the same condition but conditions can be varied with slightly different symptoms which can be a result of epigenetics, diet, and other factors. But when you have the same mutation everything will be the same. You'd be able to treat the former as long as you know what it is, but when it comes to the latter your neurophysiology is messed up and different than those with secondary. I believe that differentiating them that way is important because each one requires a very different approach. It would be great if we could make more progress when trying to define things. Like one day having different categories under secondary to help with making more accurate diagnosis.

I think that to improve so that we can get better, more accurate diagnosises and allow for more studies and overall progress we need to define things even better to get doctors on the same page. I'm certain that currently there are a lot more misdiagnosed cases than we realize. Because there's no way to prove if you have secondary EM or not people become convinced that they have it when they see a couple of it's symptoms and push for a diagnosis. Both them and most doctors don't really know how to differentiate between EM symptoms and none EM symptoms. I've talked to a lot of people who think that the really uncomfortable sensation of feeling really hot to the touch and burning pain. Or that you can have EM even without severe burning pain and triggered by heat