sibo and autonomic neuropathy

Thought this was interesting. Top are my SIBO breath test results from 2019, not long before developing neuropathy. The bottom are my SIBO breath test results from December 2020, 3m after starting keto and 1.5y into autonomic neuropathy.

https://ibb.co/xxpxkxv

The typical western medical argument is that autonomic neuropathy causes SIBO by screwing with your MMC (migrating motor complex), thereby trapping food in your small intestine where it causes overgrowth.

I find these data to be interesting for several reasons.

1.) You can see from comparing the top results with the bottom that my MMC was significantly faster in 2019 based on how quickly the sugar made it to my small intestine. Yet I had already had SIBO at that point, implying the causality runs in the other direction. I had SIBO first, then my MMC went/I developed neuropathy.

2.) Ketosis has significantly lowered my SIBO/gut dysbiosis. My hydrogen ppm in dec 2020 are 54ppm, yet they were 102 ppm in 2019. At the same time, my neuropathy is significantly lower.

This all tells me that I'm on the right track. The inflammation is likely related to whatever is causing the dysbiosis, possibly diet, or directly a result of the dysbiosis. Either way, if I can get that dysbiosis down to normal (<20ppm), I may be able to put myself into permanent remission.

Hey garzie. Fiber intake has been much lower. Fodmaps as well. My GI and my functional medicine dr both told me that my SIBO was probably caused by my autonomic neuropathy. Have seen this written/speculated in other places as well.

I just think its cool to see the data. A lot of these gut tests are very inaccurate. This is one test that can be trusted. And a lot of people are starting to speculate that what we deem "SIBO" really is dysbiosis. I.e. a dysbiotic gut will always produce more hydrogen. If that is right, then this test is measuring dysbiosis. And there seems to be a 1:1 correlation between my dysbiosis and my inflammatory neuropathy. I'm making huge assumptions, there are only two datapoints, and I'm assuming causality, but I kind of enjoyed seeing the before and after measurements. Maybe others will as well and can share their sibo experiences.

Mary seems to find that 6-9m after starting a ketogenic diet that the neuropathy often disappears. Is this the reason? I dunno. I wish I had more microbiome data on more people and could datamine it, because my GI sure as heck isnt interested.

This is very interesting to me. In spite of my having gut problems, I still haven’t done specific diets other than an elimination diet in the very beginning. While I felt better in a general sense, none of my symptoms went away, and I was starving and miserable.

Can you tell more about the test you did - name of lab and name of test? Cost?

I have had numbness all over for a long time now. When I started TUDCA a year ago, the numbness and other things significantly improved but didn’t disappear. Since moving into the remediated house, the numbness and other symptoms are back, and so is the mold.

I just assumed mold exposure was the cause and haven’t considered that gut dysbiosis could cause these types of symptoms. I still find it baffling how gut pathogens can cause symptoms like joint pain, yet I learned first hand that they can when I started Fluconazole and Nystatin.

Is the ketogenic diet one that you stay on permanently (i.e. lifestyle change), or is there a stopping point?

yeah - dcd i only mention fibre intake as a sanity check - because less fibre = slower transit time - and could therefore be part of the reason for the later peak in your second test - or at least a confounding factor.

it does make sense though that bacteria numbers will generally be lower if fed fewer carbs - and since they replicate exponentially - even when fed a single hi carb meal as in the sibo test - will not likely be able to bloom to prior carb fed sibo rates after a single meal

people with SIBO often find this - ie we can get away with one meal or maybe even two that is off "the plan" - but if we have 2-3 off-plan foods then symptoms start to increase

my understanding of dysbiosis vs sibo is:

dysbiosis - a poor mix of gut bacteria overall in the gut - mainly in the large intestine/colon where their numbers are ( should be) 1000's more than in the small intestine.

SIBO - small intestinal bacterial overgrowth - much higher numbers of bacteria ( or archaea ) residing in the small intestine ( typically something like 100-1000 x more than "normal" - from memory ) measured by aspirating the fluid from the small intestine via gastroscopy and counting them ( gold standard) - or by Breath test - as a surrogate for that.
these bacteria are usually actually the same bacteria as living in the colon - having translocated up the GI tract for various reasons - not all of which are yet understood.
neuropathy being the current emerging pre-dominant theory.
curiously SIBO seems to be present in 10-20% of the population at any one time and yet seems to be asymptomatic in some and associated with wide-ranging systemic issues in others.

in lyme disease, I suspect sufferers may well often have both Dysbiosis or SIBO - or either in isolation. Certainly, my stool and breath tests have indicated this - though neither were really off the charts.

the mechanisms by which this come about are not fully clear - but we do know that neuropathies and autonomic dysfunction are both common in lyme disease and co-infections - so perhaps this is the link or pre-dysposition.

we also see microcirculation issues in Lyme patients across the board - and this could contribute to dysfunction gut lining function - including control of microbes and tight junctions.

we also see immune system dysfunction is present in ( i would say ) all chronic lyme patients - and 70% of our immune systems are thought to reside in the gut lining - and so it seems plausible that this immune dysfunction hinders the bodies ability to regulate the beneficial microbes in the gut ( there was some discussion here recently around the fact that acc. to some studies the VDR receptor gene is suppressed by lyme by a factor of 50X - which is pertinent as this VDR gene is vital to many of the immune systems functions and particularly to control of microbes in the gut lining )

there is also widespread inflammation in chronic lyme - and this in itself may change the conditions in the gut lining favoring some bacteria vs others

finally, I read an interesting study recently where the authors demonstrated a change in the mix of pathogenic bacteria in the gut lining due to increased availability of oxygen from the blood in the tissues of the gut lining - due to decreased cellular use of oxygen by the cells in the gut lining - in this case, due to mitochondrial damage from antibiotic use.
antibiotic users of course prevalent in the Lyme patient community - but also, acc to the burrascano guidelines and many LLMDs mitochondrial damages is prevalent in Lyme patients - due to intracellular bacteria and oxidative stress.

its seems likley that several or all of these factors - and perhaps others - combine to cause and maintain SIBO - in chronically ill patients

it could also be that there is a direct auto-immune element initiated by lyme or co-infection that causes the body to attach the nerves in the autonomic nervous system and help perpetuate the condition. several researchers have speculated that anti-bodies to Lymes surface proteins and flagella cause cross-reactive auto-immunity to myelin sheaths around nerves - leading to many neuropathies - but as far as i know, this has not been fully proven

so i suspect multiple mechanisms at play in parallel

on the plus side, however - i do see some evidence to support the 6-9months of Keto supporting healthy permanent changes - this what happened to my partner - she made what seems like an almost full recovery after around this time on a v strict Keto diet ( she had to consume well under 20g of any carbs to get into and stay in ketosis - so she ate basically meat, eggs, salad and few olives for 12 months or more)
she was only doing some adaptogen herb tinctures at low dose and around half buhner doses of knotweed and Andrographis - along with some basic vitamins and supplements at this time

so i do think its possible - that all of the above mechanisms can be reversed - and that recovery is possible - if we can get enough of the mechanisms under control

my guess is they always go pretty much hand in hand - as in anything that causes inflammation in the gut will have knock-on effects in the environment there for the microorganisms to live in - and therefore on the relative quantities of each.

but i also think its possible to have only a disturbed or unhealthy mix of bacteria in the colon - without any sibo present - though this is not to say there will be no long-term health consequences later. arguably perhaps the majority of the western population are in this group - simply given the huge gap between our ancestral food intake and the typical western diet.

Interesting, thank you for sharing this Garzie. These are really strange results and I'm not sure what to make of it, but we can learn a lot. You had dysbiosis you think, yet no SIBO it appears. So that would throw a wrench in my theory about dysbiosis and SIBO going hand in hand, but not so fast. It's possible you did not have dysbiosis and your symptoms were caued by something else. In fact, based on these readings, I would assume as much. Also, your hydrogen levels did not rise even when the sugar reached your large intestine? Why? That seems off.

Either way, it appears that you did not have an overgrowth problem like I do. Which leads to believe that both our intuitions were correct. Your symptoms were being caused by an infection, mine by some sort of a dysbiotic gut.