A theory about what's causing my SFN
 

I'd like to run a theory by those of you who have the scientific expertise that I unfortunately don't; though I'm trying to address that by copious amounts of reading, I'm definitely no expert in this area.

I have a theory about the potential cause of my SFN. SIBO, a bacterial overgrowth in the small intestine, is known to cause all sorts of problems, and if left untreated, could cause kidney failure and all sorts of other problems. Put simply, it does this via causing intestinal permeability. Once this happens, the bacteria and food products leak into the blood stream. This can cause plenty of food sensitivities in people who don't even have allergies to said foods, which allergy testing has confirmed in my case (i.e., no allergies to various foods, but serious sensitivities once ingested, causing immediate nerve irritation and damage). Long story short, and to put it simply, the bacteria in particular, but also various other things leaking out through my intestinal wall, cause nerve damage. I basically imagine my situation as one in which my blood is loaded with bacteria (and perhaps other toxins that should have stayed in the gut), a body-wide infection really, causing damage to my nerves, skin and organs, all of which I've experienced over the past two years. So I basically have toxic blood flowing throughout my body.

I've had low WBC since this all started, often poor kidney function tests, skin problems and in places significant damage, generalized inflammation, and various other signs that I could have an infection of sorts.

I'd appreciate any input about this. As things stand, this is all I have, given how strongly my gut is implicated in all this, and how no tests have given me a path forward. What's certain is that I have some serious gut issues and that diet is very much implicated in my case.

Hi David,

I posted an article for you on your other thread related to SIBO and CRPS pain. There certainly does appear to be an inflammatory connection.

Littlepaw,

This article that you linked to in the other thread (404 Not Found) is great. It's all interesting. Among other bits, I noticed especially this one: "Finally, SIBO may also play a role in CRPS by means of lipopolysaccharide translocation through SIBO-induced increased intestinal permeability, which then could activate microglia activity." This is precisely what I'm talking about here. This is very motivational. Perhaps this is my problem all along, with IBS and SIBO for so many years eventually there was bound to be nerve damage from toxic blood. And as you and the article mention, there is the generalized inflammation that comes along with such a chronic and systematic infection.

Thank you again for this!

David, your theory sounds plausible to me.

I doubt that the increased intestinal permeability associated with SIBO would be large enough to allow whole bacteria to pass from the gut into the blood but it could well allow whole proteins from gut bacteria to do that. The immune response arising from that could lead to adverse side-effects, including inflammatory responses.

Has your SIBO been investigated? My understanding is that treatment with probiotic bacteria (often various kinds of Lactobacillus) is the first thing to try. If that does not work then antibiotic treatment can be considered.

Thanks for your input, Kiwi. I was hoping you would chime in, and appreciate that you did, especially given what you say about the plausibility of my theory.

I didn't know that whole bacteria couldn't get through. Is this a certainty or is it a doubt? This is where my ignorance shows, so I'm glad to learn this. But it seems that it's enough that the proteins get through. Is this what's suggested in the above article, from which I quoted the bit about lipopolysaccharides? These are endotoxins I believe. I'm wondering whether this means that I could have a twofold problem, where my blood itself is toxic and that toxicity is causing inflammation, thereby doubly damaging my body, my nerves in particular.

Anyway, all this does seem to give plausibility to my theory. Thanks to you and Littlepaw.

I've already been prescribed Rifaximin by my GI, and will begin a 14 day course shortly. Once that's over, I will begin taking a powerful custom probiotic with various strains that I've researched. And then at some point in the new year I'll take herbal antibiotics and antifungals.

Thanks again.

My well-informed guess is that it is very unlikely that whole bacteria can enter the blood from the gut in SIBO. If that happened it would probably lead to septicemia (bacteria growing in the blood), which is a very serious acute life-threatening illness, needing urgent treatment - I can't find anything about septicemia in the context of SIBO in PubMed.

You are right about lipopolysaccharides - they could well enter the blood because of the increased intestinal permeability in SIBO - their endotoxin action would be a serious concern if that happens.

As far as I can see Rifaximin is front-line antibiotic treatment for SIBO - I hope that it works for you.

Hi David, I wholeheartedly agree with you and have read enough medical reports and scientific information on pathogens which interrupt the microbiome and cause systemic and immune mediated illness. I am learning more everyday and feel that I am getting closer to figuring it out. There is also a genetic component to this as well. I am waiting on my complete genetic work up results at Columbia. My children and I were spurred into this neurological problem beginning with gastrointestinal symptoms. All of our guts were compromised. I have come across many cases on pathogenic causes that I present to any doctor who will listen. I am prepared to start trying treatments, but will request more testing to rule out bacterial, fungal, and parasitic causes. If you would like, we can compare blood work and results.

Dental work releases many millions of bacteria into the blood.

People getting joint replacement, often are given prophylaxis with antibiotics to prevent joint infections. This is being modified now. But people with heart replacement valves still are given antibiotics before dental procedures.

Strep is well known to travel to the heart and cause vegetations on healthy valves. Rheumatic heart disease, killed my mother.

Also the risk of bacterial endocarditis is higher for women who have just delivered their babies.

Bacteria do get into the blood somehow, it is just that intestinal ones are still controversial. I'd like to see some studies showing results of cultures done with blood sera to see if they really do.

Parasites? Well, some of them do move around. Toxoplasmosis will get into the retina and brain.
Hook worms will get from the feet (where larva live in soil) and end up in the GI mucosa. Pork tapeworms will end up in the brain and cause holes in the brain tissue!

There is a show from TV called The Monsters Inside Me....
I can't get it to load right now, you might Google it after all the hurricaine servers open up.
edit to add... I finally got thru to this link:
Monsters Inside Me | Animal Planet

I think alot depends on the virulence of any organism that gets into the blood. Some organisms are more likely to establish disease in mammals and humans than others.
Candida ( a fungus) does create aldehyde congeners which are irritating to nerves. I have seen claims that up to 50% of adults carry this fungus(a yeast) in the gut. The congeners are similar to those in alcoholic drinks like wine and beer. They are byproducts of the fermentation process and everyone consumes them as adults in one form or another (they are in vinegars except the distilled white). The metabolism of aldehydes relies on vitamin B1.

I just saw this article. It doesn't talk about neuropathy, but it does implicate that gut bacteria has a role in neurodegeneration.

Study demonstrates role of gut bacteria in neurodegenerative diseases

Study demonstrates role of gut bacteria in neurodegenerative diseases | Neuroscientist News



_____

Thanks, as that article is also on our Health News Headlines here
recently too.

It is the peptides released by the GI flora that seem to be the
target, not the bacteria themselves as explained in the article.

My son had alot of bloating and loose stools, so he did psyllium bulk laxative daily (metamucil) and the gel it formed absorbed the toxins in his GI tract and stopped all his discomfort. I had a
GI specialist once suggest that to me many years ago.

Thanks again, Kiwi.

And yes, the expensive Rifaximin is front-line for SIBO. I'll post here after I've taken it and hopefully I'll have something positive to report.

Please do give us an update!
I think I pm'd you but I can't figure out if it went through. This inbox/ sent thing is strange.

Hi Healthgirl,

I agree with all this, as you can imagine. I've followed all your posts and your case with the terrible situation involving your children too. I can't imagine how I'd feel in that situation and so I get your frustration with the medical establishment. It must be infuriating. I'm not sure about this, but it may be that our cases are different in that with you and your children there is some serious environmental trigger, where for me it has been long in the works via continual dysbiosis because of diet. I Again, just a thought. Your situation seems to be more extreme than mine, not that mine is a walk in the park, and diet seems to be an immediate trigger for me. I don't know, perhaps diet is a big trigger for you too.

What really matters though is that in both our situation our gut is implicated. I can't recall if you've tried antibiotics, herbal or Rx, powerful probiotics, say like the ones you can purchased from Custom Probiotics, and also diet. That's the route I'm on and in a few days I'll start the Rifaximin. And I will surely post, hopefully with good news, once I've taken them. I clearly have SIBO and dysbiosis, so there's little doubt there. Once that's over, I'll give it a few weeks, and then start on a custom probiotic blend powder that I ordered from Custom Probiotics. I've never taken them, so I'm not sure what to expect.

I'd be happy to share blood tests, but I'm afraid mine are not complete and not very useful. That's part of the problem. Nothing has really been found, other than low WBC and a few other things, which all went back to normal. The only thing that has stayed low is WBC, but even that creeps up a bit over the low end of normal. And unfortunately I don't have access to the diverse tests that you do in the States. I wish I did. I may end up going to the Mayo in a few months. If I do, I'll be happy to share that complete set, if there's anything interesting. This is the problem for me, nothing shows up, or nothing that's helpful.

I hope the new GI helps you. And by the way I didn't receive a message from you.

Thank you for this, MrsD, and for the link. There is little doubt that we are living and breathing bacteria houses in all sorts of ways. I think my body is a mess, my gut in particular, and that I need to get things straight. Most of that will have to come naturally, and medications will be of minor use here and there. In 1.5 years Rifaximin is the first one that I see a use for. Then on the with low carb diet, probiotics and herbal antibiotics and antifungals. I don't doubt that candida is also an issue with me.

Thanks for the link, Janieg. This and related research focuses much more on the brain and CNS and the big named illnesses, but it's all the same in the end. Gut bacteria gone astray, dysbiosis, and so on. I find it all interesting, and think more resources need to be focused on it.

It's true that we have access to doctors who can run labs over here, but for complicated cases, we either have to give up and accept the drugs to mask/ manage the symptoms or do the research and hope to find doctors who will help. I don't think our cases are that dissimilar David. I think genetically certain people predisposed, but it all started in the gut. There is a lot of information pointing to autoimmunity stemming from the gut. My kids are functioning, going to school, ok. I feel that due to the fact that they are growing and have rapid cellular turnover, it is not impacting them as severely. At least that is my hope- that this is not progressive. It all started with stomach aches for years, pale stool, allergies, headaches... etc, then the neurological stuff. Something was thrown out of balance and causes an immune mediated disaster.


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Perhaps you're right and our cases are not that dissimilar. I agree. I'm sure there's a genetic component for me too. I'm not sure if that has kicked in, if I've reached the point of autoimmunity yet, perhaps I have. What I know so far is that my gut is definitely implicated. And when the gut is implicated, genetics and the immune system can also be part of the equation. I hope I'm not there yet, but I can't tell. I'm going to try to heal my gut and see if that helps. I hope I'm not too far gone, that it's not progressive, so the same hope as yours. I'm glad to hear the positives regarding your children. They do have youth on their side, it seems.

Please let us know how you're doing and whether you're having success "healing."

haven't been right since I tore up my insides with iron supplements when my ferritin level dropped to 8. I had horrendous neurological symptoms when my gut felt like I had burning kerosene in it, but those did subside after a few weeks. The neuropathy set in about two months later, though. No clue if it's related or not, but I've been taking a probiotic ever since and added Candida Support when Mrs. D mentioned it.

Will do. :)

I always associated your neuropathy with diabetes or pre-diabetes or something along these lines, but it would seem there is another contender for the cause of your SFN.

If I may ask, which probiotic do you use? I've ordered a custom blend of powder from Custom Probiotics but haven't used it yet. I'll likely give it a try in a few weeks after I try the antibiotic.

I actually don't think the cause of my neuropathy is related to glucose issues. I'm sure the glucose spikes weren't helping at all, and if any good has come from this "adventure," it's that I may have staved off an eventual diabetes diagnosis. I think my cause is hormonal, spinal or gut-related. I had issues in all three areas right before onset.

I take this probiotic:

Amazon.com: Jarrow Formulas Jarro-Dophilus EPS, Supports Intestinal Function and Health, 12 Veggie Capsules: Health & Personal Care

I had contemplated taking the uBiome test or one like it, but they seem to still be a little questionable result-wise. I haven't looked into them lately, though.

I see. Thinking back, I've heard you say things along those lines, at least I seem to remember discussions about hormonal and gut issues. Are you still searching for the cause? It's interesting that there's been no progression.

Looks like an pretty decent set of bacterial strains. Some of them are in the custom one I ordered. Do you find you get some benefit from it?

I've even considered FMT, so I'd be lying if I said the uBiome test doesn't interest me. Thanks for mentioning it. I'd never heard of it. What do you find questionable about it. I looked at it quickly, and I wasn't sure what the results will reveal other than note the strains (at least some of them?) in a person's gut. I wonder if there are better tests. I had heard that such tests, or to be more precise tests done through labs are upwards of $400-500. Perhaps those are different tests. I'm going to look into this some more. Thank you again for bringing it to my attention.

The only thing I can find that might be causing my whole body SFN is Prediabetes. How many here have Prediabetes or Diabetes?