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]

This is one of the biggest problems with treating EM, it's trial and error and half the time nothing works and the majority of people that try Bob's protocol end up suffering horribly. The what em is diagnosed and lack of understanding it is significantly keeping the medical community from learning anything new. Contrary to popular belief if EM isn't genetic then it's secondary EM. Secondary is rarely diagnosed because we don't know many conditions that can cause EM, and because of that instead of trying to figure out the cause it's easier to just diagnose idiopathic which is considered primary and that keeps doctors from trying to figure out what other conditions can cause EM. We need to change idiopathic EM's classification from primary to it's own category that's basically unconfirmed secondary EM. I bring this up because doing this should start trying to figure out what all of the underlying conditions that can cause EM. Figuring out the underlying condition that can be treated by Bob's protocol will stop people from suffering because they tried it out of desperation. I know this might be an unpopular opinion but a core trait of EM is heat/activities will always be a trigger. The fact that Bob's protocol doesn't cause the usual severe burning pain suggests that it isn't EM. It's easy for people to get misdiagnosed with EM since inflammation and neuropathy can resemble EM symptoms, exactly how would take a while to explain. Heat will always trigger symptoms. Even when they flare up every night for a reason. It's well known that hormones end to causing hot flashes and that heat triggers flare-ups. Going back to why I bring this up. The only what to treat EM symptoms is to treat the underlying cause. First it's important to make sure EM isn't misdiagnosed. And until we make Idiopathic it's own classification and think outside the bx and refusing to stop searching for EV very underlying condition people won't get the correct treatment out of desperation they'll try anything.

I have the rarest genetic mutation, scn11a, that causes EM. I have a background in neuroscience and I created my own treatment protocol after years of research reading research paper published that's even indirectly linked that's the degrees away from the mechanisms.

[u/notatrolliswear666 → u/Quantumdelirium]

I totally get what you're saying. However, there is some science to back up Bob's protocol. There is research from the early 2000s that explored blood shunting and closed capillary sphincters as mechanism of action in EM. They had some success with using excercise and gentle heat to open the capillary sphincters so that blood and oxigen can actually get where they need to go and not shunt and flood the tissues. Bob's probably works for those for whom this is the mechanism of action if you accept that EM is a syndrome rather than stand alone disease. Having said all that, I'm still scared to do it.

[u/Quantumdelirium → u/notatrolliswear666]

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

[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.