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Old 03-08-2023, 10:50 PM #1
DavidHC DavidHC is offline
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Default 10 Year Update: How I significantly Improved My Full Body Neuropathy

I wasn't sure what to title this post but I'm here to talk about the significant improvement and healing I've experienced recently after so many years of suffering with this disease. I haven't posted in some time and it's been years since I was active on this forum, but I've been meaning to come back and post this. You can look up my posts under my profile to learn my story if that interests you, but suffice it to say I've been suffering from full body small fiber polyneuropathy with autonomic dysfunction for at least the last 10 years. I was diagnosed around 2015 I believe, though I'm not completely sure at this point without looking back at the paperwork.

I was diagnosed in my early 30s and suffered a great deal over the years, losing my chosen/preferred career, many friends, hobbies and goals, not to mention all the pain I suffered. I had it all unfortunately. I've watched as much body became less and less mine, and more and more something I no longer recognized. I became depressed and effectively gave up on life, just wasting each day and doing just what I needed to do to pay the bills. I lost more and more control of my body with each passing day. Don't get me wrong, initially I tried everything, from tracking down the best neurologists to try to determine the etiology of my idiopathic SFN to trying every diet and supplement. Nothing worked and I was left watching the disease progress and target new parts and functions of my body.

It had been years since I had given up, until by chance I came across something people are calling a carnivore or animal based diet. I had tried paleo for a while and the same with a ketogenic diet, but neither had truly changed anything for me, nothing remotely akin to the carnivore diet. I began a 6 month project of reading up on the diet and the mechanisms at work, watching YouTube videos with experts (scientists and physicians), reading pertinent research/studies, etc. I finally took the plunge recently and the change to my life has been dramatic to say the least.

There is a great deal of talk about various diets reducing inflammation and reversing disease processes but this one actually did it. Sure, I had some improvement on other diets, but it wasn't until I removed all plant foods that I saw an almost complete reduction of my inflammation. For example, on the keto diet, I could still eat some veggies and nuts and seeds, which were hugely problematic with their high levels of anti-nutrients. Of course, there is stress and other factors in life, but within weeks I resolved my IBS, fasciculations, joint pain, and so much more. My trigger finger disappeared within the first month, something steroidal injections has been unable to do, and which had lead my doctor to say I may lose the use of my hand and that surgery likely would not reverse the problem permanently. Most important of all, in the first week my neuropathic pain was reduced. Several weeks in my symptoms and pain were reduced by 95%! I still get the odd symptom but most of the time I forget about my disease. I donít even shake/vibrate intensely when I lie down to sleep. The first night I experienced this for the first time since this disease began I found myself reduced to tears. My energy levels, mood, and focus are as they were a decade ago, and I have no complaints. I don't believe in miracles but this way of eating has changed my life. With every passing week I notice more improvements and I can't wait to hit the 1 year mark. I also lose about 10-15 pounds a month, and lost 20 lbs the first month, though it does seem like Iím reaching my bodyís healthy weight now and so Iím not losing as much these days. My body is becoming leaner and more muscular and Iíve been able to lift weights again, which I didnít think Iíd ever be able to do.

My wife decided to be supportive and take the plunge with me and one of her autoimmune illnesses seems to have gone into remission. Her doctor was amazed but she said she would see her at the 6 month mark before she formally says it's in remission in her notes. My parents have also come on this journey with me and they have both reversed their high blood pressure and now have normal A1C after being diagnosed with pre-diabetes and diabetes. Their doctor also can't believe it and was initially convinced this way of eating and living would kill them. Now he says they should do whatever theyíre doing as itís working for them.

As I see it, this is just the beginning, and though I'm amazed it's fare to say I'm cautiously optimistic. Iíve always been that way. There's no doubt I'm cautious and would like to see how this is working for me in 1 yearís time, in 2 years, and so on, but it's fair to say nothing I did before this had this level of impact on my health, nothing has come close. The science makes sense and I'm basing my future projections on that and the results Iíve already seen. However, the human body is complex and only time will tell. Itís too early to say whether Iíve managed to do enough for to reverse my neuropathy or not allow it to progress. Itís far too early to tell and Iím not the kind of person to jump to conclusions and false hope. But I can say I feel stronger, have far less pain, and donít feel like I have neuropathy 95% of the time. Of course, the severe damage to my body is still there and, for example, I havenít gotten feeling back in my feet or my hands, and the like, but I have gotten some strength back. Iíve only just started and nerves regenerate quite slowly.

It's also important to mention how there were hiccups in the transition process and it takes some time to become fat adapted. If you have a high level of insulin resistance, this will be even more so the case, and your body may fight you when you remove the carbohydrates. There may be issues with sleep, GI related, and the like, but eventually your body should adapt, or mine and my family's did within days and weeks. What also helped me was working with a health coach, a profession I didnít know existed! Well, it does, and when I hit some road blocks, speaking to someone who knew more than me and who had worked with others in the carnivore space/community made a big difference. He also recommended a number of Youtube videos with firsthand accounts/personal experiences and with experts addressing the various issues and the science, as well as scientific papers, and I found all this helpful.

Itís all really simple, removing all the plant anti-nutrients from my diet, and eating nutrient rich animal foods, fats and protein, significantly improved my health. Iíd be lying if I said it didnít take some time to wrap my head around what a healthy diet really is after many years of thinking otherwise. Thinking back on my life, I now realize that my neuropathy began shortly after my many years as a vegetarian and the GI issues that resulted in at the time. Of course, I canít know for sure, but thatís when my gut health began to deteriorate and one disease after another began to spring up. Thatís neither here nor there though, and what matters is that for the first time in a decade I feel like I have my life back. I hope I continue to feel this good and to see improvement in my health.

The funny thing is that for me it wasnít difficult giving up the carbs because just after a few days I began to see one improvement after another, and when the nerve pain went, no amount of cravings could make me turn back. The cravings disappeared after a few days and Iím happy to eat this way the rest of my life if it means living like this, with better health and almost no pain. Though it would be something to see some reversal of my nerve damage! It should go without saying that this is not medical advice but my own experience, though if you have any questions, Iím happy to answer any I can in the comments or private messages.

Last edited by DavidHC; 03-09-2023 at 02:15 PM.
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Old 03-25-2023, 05:17 PM #2
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Thank you for sharing; this is very hopeful! I first read your story on NeuroTalk shortly before May 2019. It was discovered then that toxic mold exposure was the underlying cause of my neuropathy (and host of other ills).

Your description of symptoms sounded so identical to mine that, while I am certainly in no position to diagnose anyone, all I could think of was "he's living in mold, I just know it".

I could see how being a vegan could set up someone for neuropathy. I suspect vegans typically don't get enough nutritious fats and the nervous system definitely needs fats to function properly.

That said, if you don't mind me asking, did you ever consider mold as an underlying factor (maybe in addition to the possible consequences of a vegan diet )? I ask because you mentioned your wife has an autoimmune disorder, and the few mold experts that are out there are quick to say anytime there is a diagnosis of an autoimmune disorder toxic mold exposure should be considered.

So I'm curious, in the course of your recovery thus far, have you moved or changed work location? Has there been any change in location for which you have usually spent a great deal of time?

Your update prompted me to look into the carnivore diet for myself. I checked on a particular FB group for mold avoiders and found that some "moldies" have had good success with a carnivore diet (perhaps their gut microbiome is getting reset by it).

Thank you again; I'm very interested to hear your thoughts on a possible mold exposure.
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Old 03-28-2023, 08:48 PM #3
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Thank you for reading my story and update and for caring. I'm sorry that toxic mold has caused your ills and neuropathy more specifically.

Though I'm sure I've been exposed to mold, I don't suspect it in my case for various reasons. Of course, there's no way to know for sure and I'm not so self-certain to assume I know where I do not. Environmental exposure is certainly possible, but during the last 10-15 years I've lived in at least half a dozen different places in multiple countries. I suspect mine is due to metabolic disease related to my severely damaged gut from terrible nutrition, including lots of carbs and alcohol, not to mention very high stress. I should also mentioned that I was never vegan, but rather vegetarian. Veganism is absolutely destructive when it comes to nutrition and whoever says otherwise is ignorant of the basics of paleo-anthropology and human anatomy and physiology. So I agree with you there.

I would certainly consider the carnivore diet if you're serious. I would also recommend reading up on CIRS if you already haven't. In fact, you can find some good information here from a carnivore nutritionist who also works with CIRS patients: Nutrition with Judy - YouTube. The health coach I work with virtually is extremely knowledgeable and was central to helping me through the transition to carnivore which was somewhat bumpy for me the first few months given the degree of my illness, but he does not specialize in CIRS, though he does specialize in neuropathy, autoimmune disease, and diabetes/metabolic disease. He himself lives with neuropathy. Anyway, Judy Cho is worth listening to when it comes to CIRS and it's a plus that she's a carnivore nutritionist. The carnivore diet is the ultimate elimination and anti-inflammatory diet, so it's a great start even if you don't stick with it long term and decide to reintroduce some of the less harmful plant foods.
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Old 04-01-2023, 12:50 PM #4
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Thank you for the Nutrition with Judy tip. Yes, I did come across her website when I was researching the carnivore diet and its impact on those poisoned by mold toxins. I do have CIRS and was impressed at her level of knowledge (and acknowledgement) of diet as it pertains to mold detox.

Sorry for misspeaking about your vegetarian history and writing as though you had been a vegan. (Brain fog comes with the toxin overload territory.)

I have been on the carnivore diet for one week so obviously it's quite early in the game. My original goal was a month (okay, a day) but the more I have read, the consensus seems to be give it 90 days. Prior to starting I had somewhat decent habits: grass-fed beef, raw dairy at times, fermented cabbage and the obligatory vegetables (sweets in small amounts but admittedly daily or every other day). So the transition so far has not been dramatic but I am very interested to see how this turns out.

Thank you again for your posts. May the Lord use you and your journey as an instrument of His grace.
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Old 04-02-2023, 10:30 AM #5
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Quote:
Originally Posted by DavidHC View Post
I wasn't sure what to title this post but I'm here to talk about the significant improvement and healing I've experienced recently after so many years of suffering with this disease. I haven't posted in some time and it's been years since I was active on this forum, but I've been meaning to come back and post this. You can look up my posts under my profile to learn my story if that interests you, but suffice it to say I've been suffering from full body small fiber polyneuropathy with autonomic dysfunction for at least the last 10 years. I was diagnosed around 2015 I believe, though I'm not completely sure at this point without looking back at the paperwork.

I was diagnosed in my early 30s and suffered a great deal over the years, losing my chosen/preferred career, many friends, hobbies and goals, not to mention all the pain I suffered. I had it all unfortunately. I've watched as much body became less and less mine, and more and more something I no longer recognized. I became depressed and effectively gave up on life, just wasting each day and doing just what I needed to do to pay the bills. I lost more and more control of my body with each passing day. Don't get me wrong, initially I tried everything, from tracking down the best neurologists to try to determine the etiology of my idiopathic SFN to trying every diet and supplement. Nothing worked and I was left watching the disease progress and target new parts and functions of my body.

It had been years since I had given up, until by chance I came across something people are calling a carnivore or animal based diet. I had tried paleo for a while and the same with a ketogenic diet, but neither had truly changed anything for me, nothing remotely akin to the carnivore diet. I began a 6 month project of reading up on the diet and the mechanisms at work, watching YouTube videos with experts (scientists and physicians), reading pertinent research/studies, etc. I finally took the plunge recently and the change to my life has been dramatic to say the least.

There is a great deal of talk about various diets reducing inflammation and reversing disease processes but this one actually did it. Sure, I had some improvement on other diets, but it wasn't until I removed all plant foods that I saw an almost complete reduction of my inflammation. For example, on the keto diet, I could still eat some veggies and nuts and seeds, which were hugely problematic with their high levels of anti-nutrients. Of course, there is stress and other factors in life, but within weeks I resolved my IBS, fasciculations, joint pain, and so much more. My trigger finger disappeared within the first month, something steroidal injections has been unable to do, and which had lead my doctor to say I may lose the use of my hand and that surgery likely would not reverse the problem permanently. Most important of all, in the first week my neuropathic pain was reduced. Several weeks in my symptoms and pain were reduced by 95%! I still get the odd symptom but most of the time I forget about my disease. I donít even shake/vibrate intensely when I lie down to sleep. The first night I experienced this for the first time since this disease began I found myself reduced to tears. My energy levels, mood, and focus are as they were a decade ago, and I have no complaints. I don't believe in miracles but this way of eating has changed my life. With every passing week I notice more improvements and I can't wait to hit the 1 year mark. I also lose about 10-15 pounds a month, and lost 20 lbs the first month, though it does seem like Iím reaching my bodyís healthy weight now and so Iím not losing as much these days. My body is becoming leaner and more muscular and Iíve been able to lift weights again, which I didnít think Iíd ever be able to do.

My wife decided to be supportive and take the plunge with me and one of her autoimmune illnesses seems to have gone into remission. Her doctor was amazed but she said she would see her at the 6 month mark before she formally says it's in remission in her notes. My parents have also come on this journey with me and they have both reversed their high blood pressure and now have normal A1C after being diagnosed with pre-diabetes and diabetes. Their doctor also can't believe it and was initially convinced this way of eating and living would kill them. Now he says they should do whatever theyíre doing as itís working for them.

As I see it, this is just the beginning, and though I'm amazed it's fare to say I'm cautiously optimistic. Iíve always been that way. There's no doubt I'm cautious and would like to see how this is working for me in 1 yearís time, in 2 years, and so on, but it's fair to say nothing I did before this had this level of impact on my health, nothing has come close. The science makes sense and I'm basing my future projections on that and the results Iíve already seen. However, the human body is complex and only time will tell. Itís too early to say whether Iíve managed to do enough for to reverse my neuropathy or not allow it to progress. Itís far too early to tell and Iím not the kind of person to jump to conclusions and false hope. But I can say I feel stronger, have far less pain, and donít feel like I have neuropathy 95% of the time. Of course, the severe damage to my body is still there and, for example, I havenít gotten feeling back in my feet or my hands, and the like, but I have gotten some strength back. Iíve only just started and nerves regenerate quite slowly.

It's also important to mention how there were hiccups in the transition process and it takes some time to become fat adapted. If you have a high level of insulin resistance, this will be even more so the case, and your body may fight you when you remove the carbohydrates. There may be issues with sleep, GI related, and the like, but eventually your body should adapt, or mine and my family's did within days and weeks. What also helped me was working with a health coach, a profession I didnít know existed! Well, it does, and when I hit some road blocks, speaking to someone who knew more than me and who had worked with others in the carnivore space/community made a big difference. He also recommended a number of Youtube videos with firsthand accounts/personal experiences and with experts addressing the various issues and the science, as well as scientific papers, and I found all this helpful.

Itís all really simple, removing all the plant anti-nutrients from my diet, and eating nutrient rich animal foods, fats and protein, significantly improved my health. Iíd be lying if I said it didnít take some time to wrap my head around what a healthy diet really is after many years of thinking otherwise. Thinking back on my life, I now realize that my neuropathy began shortly after my many years as a vegetarian and the GI issues that resulted in at the time. Of course, I canít know for sure, but thatís when my gut health began to deteriorate and one disease after another began to spring up. Thatís neither here nor there though, and what matters is that for the first time in a decade I feel like I have my life back. I hope I continue to feel this good and to see improvement in my health.

The funny thing is that for me it wasnít difficult giving up the carbs because just after a few days I began to see one improvement after another, and when the nerve pain went, no amount of cravings could make me turn back. The cravings disappeared after a few days and Iím happy to eat this way the rest of my life if it means living like this, with better health and almost no pain. Though it would be something to see some reversal of my nerve damage! It should go without saying that this is not medical advice but my own experience, though if you have any questions, Iím happy to answer any I can in the comments or private messages.
David, thank you for sharing this. I'm 84 and have had idiopathic neuropathy for the past 25 years in my feet and the past couple of years it has progressed to my ankles and lower legs.

Like you, I have run the gamut on different diets, nutrition and doctors. I'm excited to learn more about your journey with the carnivore diet. This would be my last resort because I've tried them all. The main thing I'm concerned about is my IBS problem and how would the diet affect it. I've been trying with different fiber powders and supplements but I guess that wouldn't be allowed, not that any of it really helps. I sometimes think I'm my own worst enemy because I really don't know what I'm doing.

I am going to watch the videos you talked about on YouTube. Also, how would I connect with a Health Coach for support? I came back on Neurotalk today after being gone for a few years, and the first post I read was yours. To me it all makes sense because after meals with carbs I become bloated and very uncomfortable which lasts all day and into the next day, making it a constant problem. I've tried counting carbs and fiber but it seems one is so different from the other that I get confused as to which way to go.

I'm not sure how to us the PM because I have to relearn the website from being away too long. I want to give up on fb and come back here where there are more serious adult discussions. Thank you again David, much appreciated. Your post has given me some hope to move forward.
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Old 04-02-2023, 08:20 PM #6
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MidwestWife, there's no need to apologize. As far I'm concerned it's all the same: humans eating the improper diet as my health coach puts it. I wish I had known better at the time. To be fair, a vegetarian diet is less nutrient deficient than a vegan diet that does not work without supplementation and barely even then. Anyway, I've never been interested in debating between the various diets but finding what works for me and I'd never begrudge anyone something that helps them. That's all to say no offense taken.

You're welcome about the tip. I thought you might find it useful. She's good. I am sorry you have CIRS and I hope you can get better. One week is just the very beginning and I do think a few months, so 90 days, will give you the most accurate sense of things. But everyone is different as they say. Based on the diet that my health coach recommended, I started with only red meat, salt, and water and after a few months I started to add other animal based foods in. Dairy and eggs can cause inflammation in some and I still haven't reintroduced either. I need to heal my gut first. Your diet before this was better than mine since I had mostly given up given the poor results after so many years.

One piece of advice since you're not working with a health coach is look into *oxalate dumping*. There are some good videos on YouTube. It's something you want to avoid because it can have some terrible health consequences. I'm not sure if you had an oxalate rich diet, and it doesn't see like you did from what you say here, but you may want to look into what it is and what foods contain oxalates. I had a high oxalate diet before and I had to be careful. I didn't know this until my health coach told me about it and gave me some information about it. It doesn't mean you can't go on the carnivore diet, but it means you need to transition into it and not eliminate oxalates all at once. Good luck on your journey.
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Old 04-02-2023, 08:47 PM #7
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Rosie, thanks for reading and for your comment. I'm sorry you've been dealing with this disease for so long. I wouldn't wish it on my worst enemy. It does sound like you've tried your fair share of things. I know first hand how discouraging it can be. This is the first time in 10 or more years that I've actually had real results and it's exciting. It was also my last resort to be frank and I had barely been on here for years since I was quite hopeless. I'm grateful that has changed.

I was worried about IBS as well because I've had it as long as I can remember. I started this diet before I met with my health coach and almost immediately I was pleasantly surprised because about 80% or more of my IBS symptoms resolved themselves. All the bloating went away within 2 or 3 days and within 2 weeks my daily struggle that could go on for hours one and off was very quick. This may have been the best surprise of this diet. When I connected with my health coach with some tips the rest improved though I wouldn't say I'm 100% normal whatever that means. But my goodness it made a world of difference and gave me back my comfort and time. There may be some diarrhea at the beginning because of the increase in fat but it goes away when you get the hang of it and your body adapts. The health coach really helped me get my protein to fat ratio right to avoid this issue and the opposite, so constipation. One thing I've learned is that fiber can and does make things worse, especially the bloating. I can eat a big meal now and my stomach doesn't bloat at all, which it almost miraculous to me, even though it's basic science and happens when you cut out the plant chemicals.

I hope this diet helps you and I would recommend working with someone if you can. Some people in the carnivore community say it's the easiest diet, all you have to do is eat meat, and so on, but when you have chronic health problems it can be more complicated and there are issues to watch out for like oxalate dumping and excessive protein consumption. If you do want to work with a health coach, I can provide you with the contact information of the person I'm working with right now. I tried another one first and she was not good for me even though she tried, but now I have someone who works for me and is cheaper, which always helps these days. Finding the right health coach is like finding the right therapist or doctor, they have to be right for you, but the only way to tell is to try working with them. I got lucky finding this guy through a friend and it worked out so I could stop looking and wasting money. It made all the difference that he was smart, kind, attentive, and himself suffer was neuropathy and some other issues that I shared. Anyway, I'll PM you on here and provide you with his details in case you want to contact him. You can see this by looking for "Private Messages" at the top right corner of the page, under your username. EDIT: Unfortunately I tried sending you a PM and it says you can't receive them. I'm not sure why that is, so maybe you can figure that out and send me one and I'll reply with his contact information.

Whether you choose to work with him, another health coach, or do it on your own, I would recommend reading the science if you can and watching video on YouTube from reputable sources. It was hard for me to judge who was reputable at the start when it came to YouTube so I read the scientific studies, mostly on the keto diet, and also read some books, and watched personal accounts of people on the carnivore diet. My health coach also helped direct me to some reputable carnivore channels and that's how I learned about nutrition with Judy. Whatever you decide, good luck! I hope this path helps you.
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Old 04-03-2023, 11:09 AM #8
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David, I'm trying to find out how to get the pm working.
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Old 04-03-2023, 11:23 AM #9
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I received it and replied to your PM, so it worked.

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David, I'm trying to find out how to get the pm working.
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Old 04-03-2023, 01:10 PM #10
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I received it and replied to your PM, so it worked.
David, I'm confused about which vitamins and supplements to take. Did you ever stop taking B6 because of it's toxicity? It's hard to fine any multi vitamins without B6.
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