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Old 04-02-2023, 10:30 AM
Rosie33 Rosie33 is offline
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Join Date: Feb 2011
Location: USA
Posts: 151
10 yr Member
Rosie33 Rosie33 is offline
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Join Date: Feb 2011
Location: USA
Posts: 151
10 yr Member
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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 don’t 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 I’m reaching my body’s healthy weight now and so I’m not losing as much these days. My body is becoming leaner and more muscular and I’ve been able to lift weights again, which I didn’t think I’d 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 they’re doing as it’s 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. I’ve always been that way. There's no doubt I'm cautious and would like to see how this is working for me in 1 year’s 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 I’ve already seen. However, the human body is complex and only time will tell. It’s too early to say whether I’ve managed to do enough for to reverse my neuropathy or not allow it to progress. It’s far too early to tell and I’m not the kind of person to jump to conclusions and false hope. But I can say I feel stronger, have far less pain, and don’t feel like I have neuropathy 95% of the time. Of course, the severe damage to my body is still there and, for example, I haven’t gotten feeling back in my feet or my hands, and the like, but I have gotten some strength back. I’ve 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 didn’t 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.

It’s 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. I’d be lying if I said it didn’t 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 can’t know for sure, but that’s when my gut health began to deteriorate and one disease after another began to spring up. That’s 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 wasn’t 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 I’m 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, I’m 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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