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Posted 4/29/2021 12:58 PM (GMT -5)
Kinda just wanted to vent. I'm not sure what else can be done. I'm out of options, except for a maybe an FMT or experimenting w/ antiparasitics.

Everyone here knows my story. Had autoimmune like symptoms, possible lyme my whole life. Got a bad stomach infection on vacation and developed autoimmune neuropathy. Did some abx, no change. On IVIG. Did 6m of ultra strict keto. Digestion improved remarkably. Seemed to help autoimmune symptoms.

Well, about 1.5m ago I could no longer handle eating like a turtle every day, and my stomach seemed so much better, so I slowly came out of ketosis. I've had a few cheat meals. Some chocolate. Some fries a few times. A piece of breaded chicken. My stomach has since devolved into a nightmare. My SIBO symptoms are back. Explosive stools, bloating, burping, feeling like I want to hurl. Fatigue. Depression (this was eye-opening to see how correlated my mood is to my gut health). Ironically my neuropathy has been much improved, likely due to my autonomic work.

But I'm not sure what else I can do. I've done rifaxamin many times. It clears the SIBO for a short period of time, then its back. I cant handle eating like that anymore. All herbs flare me. And I'm not convinced they wont have the same exact effect as rifaxamin, they clear the bacteria but they dont change the microbiome for the better. In fact, they may lower microbial diversity when used long term. Probiotics are like throwing fuel on the fire.

Really not sure what else can be done. I'm pretty sure that whatever microbe I contracted in central america just destroyed my microbiome and its fried. This really really sucks.

Only thing I can think to do is try an FMT, which is dangerous since you can sometimes trigger another autoimmuen disease. Or maybe I have a concurrent parasitic infection. Maybe I should try ivermectin. I did tindimax, just 2g over the course of a single day, which my dr assured me was enough.

Argh!

Post Edited (dcd2103) : 4/29/2021 12:09:12 PM (GMT-6)

Posted 4/29/2021 2:35 PM (GMT -5)
I know that you are doing a lot of different things than just taking treatment, but I just want to say that my biggest improvement has been from DNRS and now reducing my internet usage to give my system more rest. There are always things you can try to get better that have zero or very little risk. Earthing and spending time in nature have been great also.
Posted 4/29/2021 2:43 PM (GMT -5)
Hey deep sleep. I’m doing lots of autonomic work which seems to be helping my nerve pain, I meant I’m kind of out of interventions specifically for my stomach. I’m hoping when I go to the Spero clinic if they can really truly heal my autonomics and get me out of fight or flight that the stomach will heal itself, but who knows
Posted 4/29/2021 2:57 PM (GMT -5)
I used to have a ton of problems with my stomach and couldn't leave the apartment when it was at the worst, as I had to go to the bathroom all the time. A lot of things in the body don’t work when you are in fight or flight, so even as they don’t target the stomach you could still get some relief. I'm not really targeting any special area, but just working on everything I can think of that could help my general health.

Improving the gut bacteria is hard, and not something I have that much knowledge about. My experimenting with kimchi didn’t work well. There is always some risk when taking treatment, fermented food, etc, that it can mess it up even more and trigger more SIBO problems.

Post Edited (Deep_sleep) : 4/29/2021 2:01:33 PM (GMT-6)

Posted 4/29/2021 9:19 PM (GMT -5)
dcd,

In your other post, 1000Daisies had some articles linked. In that last article, it mentioned ketones fuel Candida growth. Did you catch that?

Take a look at this. She has some very helpful articles. This is in regards to FODMAPS and both SIBO and Candida.

https://www.holistichelp.net/blog/fodmaps-and-paleo/

Post Edited (WalkingbyFaith) : 4/29/2021 8:33:28 PM (GMT-6)

Posted 4/30/2021 4:12 AM (GMT -5)

WalkingbyFaith said...
dcd,

In your other post, 1000Daisies had some articles linked. In that last article, it mentioned ketones fuel Candida growth. Did you catch that?

https://www.holistichelp.net/blog/fodmaps-and-paleo/

i read that but i understood it to be a theory based on some petri dish experiment - rather than something that has been established to happen in humans. so whilst interesting - it should not be a massive surprise to find that yeasts like candida can survive in a low sugar environment - after all its known to be one of the common pathogens that can infect IV lines and catheters etc - so can clearly live without sugar in high concentrations - ie in the blood.

however this a long way from proving that changing your diet causes it to become invasive - so i would just say beware of interpreting those remarks as proof.

when our health is involved and we suffer from mysterious life changing disease - it can be easy to interpret risks as magnified - or interesting anomalies in one sphere as proof of something else.
Posted 4/30/2021 4:34 AM (GMT -5)
Dcd - i sympathise - and am in much the same position regarding diet - any time i stray far from what works - i tend to have flares in gut symptoms - which then generally affect my overall health.

for me the "sacrifice" of eating the way i do seems worth it - in fact I no longer see it as a sacrifice - as - on balance - of the available options - i am better off eating this way than not and that is the simplified logic i stick with - as the other option is to believe i have the option of eating how i used to or how i see people in the supermarket load up their trollies - but that reality is not available to me - so i choose not taunt myself with it.

some things we have found that helps keep us on the wagon

Variety
we have a fairly large list of foods that seem to work and try to rotate elements for variety
variety fights against boredom and increases enjoyment -
eg meats - we tend to cook a large joint and eat of that for a few days
1 hot meal - then cold cuts - and then change to a new meat - Beef, Pork, Lamb
the fresh joint is always a welcome change

1 meal or 1 day a week eating some kind of "not quite keto" treat
my partner finds this a real lift in particular - and i like seeing her get a lift from it
last week it was oat and buckwheat pancakes with a little jam spread on them and a few blueberries
not exactly a huge blow out i know - but a real change and sweet treat as a breakfast
i have zero or near zero health impact from this one time relaxation - and suspect you may find similar

initially reading your post i wondered if you had simply done too much too soon - as the functional medicine guys who write so much about SIBO and gut treatments say that's one of the reasons treatments fail - they say this is because things grow back quicker than the gut can keep them in line and achieve homeostasis - but I'm guessing that you are familiar with al that and went pretty slow.

my experience was also similar and seems to result in the same no matter how slow i go - although i do tolerate more than i used to - its only by degrees. so there is an underlying mechanism that we are not hitting on yet. this is a known thing for many SIBO sufferers - repeated relapse after treatment - and the reasons for it have been largely mysterious until recently

i must try to find a link to the article - but i believe the World's leading SIBO researcher - Dr Mark Pimental published something in the last 12 months indicating the mechanism is some kind of neuropathy in the gut itself - triggered by some kind of immune dysregulation.

if i find ivermectin helps i will be sure to post up about it.

in the meantime - keep the faith and keep up the good work!
Posted 4/30/2021 5:31 AM (GMT -5)
Hey WBF, I had heard that theory re: candida and ketones before. Kris Kesser has mentioned it too. I'm not sure I ever bought it as it was only a theory, but after you pointed it out I started to think about it and maybe it's true. My yeast seems to have gotten worse after coming off keto, so maybe it did allow it to take over. Thank you for pointing that out!

Garzie, thanks for the ideas as well. I like the allowing myself to have one snack a week idea. I may adopt that way of eating and just stick to it. I cant go zero fun foods again, did that for 6m and it didnt truly work. Mary my naturopath says its because i needed a year, but I'm skeptical. I think I can keep my symptoms at bay like you do eating healthy most of the time, and allow myself a treat for my sanity and that will help.

So I've come across a few ideas sine yesterday. I already do plan on asking my LLMD about ivermectin. But in addition:

1.) I saw an immunologist yesterday who specializes in functional GI disorders. He felt that yeast is likely a big problem for me. He said in his experience, and he doesnt know why, but when people with SIBO cant get better, he treats yeast, and when its gone everything falls in line. He wants to try nystatin (after 2 vitamin infusions which i begrudgingly agreed to), so I will explore that avenue.

2.) I listened to this podcast last night. Possibly the most informative podcast I've ever listened to on SIBO. He' sa PhD microbiome researcher turned functional GI dr.

https://feedmephoebe.com/prebiotics-probiotics-sibo-treatment-jason-hawrelak/

My confusion was that some some people will tell you to stay away from pre and probiotics if you have SIBO, its fuel on the fire. Others recommend pre/pro-biotics to heal the gut. At the same time, they say to stay away from fodmaps. Pre-biotics are fodmaps. So much contradictory information. He clears all that up.

The takeway was that this microbiome researcher in the podcast went and looked at all of the research, and found in his practice and in the research that pre and pro biotics do help SIBO. WRT to pre-biotics, you need the right ones that selectively feed the probiotic bacteria and not the opportunistic ones. He studied every paper and did experiments and found that for pre-biotics, the most selective pre-biotic is partially hydrolyzed guar gum (PHGG). Shows the data how it works to reduce IBS and SIBO. Wrt to probiotics, he says that they will NOT colonize. He doesnt advocate throwing probiotics willy nilly at SIBO if you dont know what yorue doing. Research says they help, but in practice some people get worse. Therefore you have to pick a probiotic that is doing something useful. Be it lowering inflammation, increasing motility, or having antimicrobial action against bad strains. He said by far the most antimicrobial strain he's found i Lactobicillus Reuteri DSM 17938. You can find this in the product BioGaia. Wrt to herbs, he says you also need to pick a "selective" herb. One that tends to target more of the bad guys than good ones. Wrt to this he likes allicin/garlic. Says stay away from extracted Oil of Oregano for example, will trash the good guys. If youre goin to take it take it as a tincture since it has the polyphenols and all the other selective ingredients.

So those are 3 things I may try as well. The PHGG, the BioGaia and potentially the allicin, although Im sure the garlic will flare me.

Post Edited (dcd2103) : 4/30/2021 4:47:24 AM (GMT-6)

Posted 4/30/2021 5:46 AM (GMT -5)
sounds like a reasonable plan dcd

moderation and selectivity on all fronts

here is the article was thinking of - its a CK podcast - could not readily find the published paper
https://chriskresser.com/a-new-understanding-of-sibo-and-ibs-with-mark-pimentel/

but in the interview it states
Chris Kresser: Yeah, yeah, definitely. So again, just in the interest of helping listeners understand this, so we could say—and I’m not going to hold you to this—but in the subset of people who test positive for these antibodies, especially people who test positive for both, one way of looking at this is that IBS in those situations, or what we’ve been calling the condition previously known as IBS, perhaps it will be at some point, is an autoimmune condition that is affecting the nerves in the small intestine, or in some sense causing nerve damage in the small intestine, and that is what is leading to these symptoms of gas and bloating and altered stool frequency.

Mark Pimentel: Yes, that’s the hypothesis we’re working with.

in previous published papers the same guy has demonstrated that IBS is basically SIBO

so basically we are back to try to find things that switch off the auto-immunity - or the triggers keeping it active - which is clearly possible as some people do recover
Posted 4/30/2021 7:56 AM (GMT -5)
It’s nice you had so much testing done. My gut is probably my #2 driver of symptoms and possibly even #1. Unfortunately, neither of the mold/Lyme doctors I have seen seemed interested in any testing. I only got the OAT test because I asked for it.

My OAT under bacterial markers showed very high hippuric and high 4-hydroxyhippuric. Interestingly, the lab notes say the hippuric can derive from GI bacteria or exposure to toluene. The 4-hydroxyhippuric can be related to parabens.

Since my hair grayed at a very young age, I dyed my hair for many years, even while frequently having burning and inflammation at the base of my skull for 24 hours after getting my hair dyed at the salon I went to the longest. After switching salons, I didn’t have reactions like that until I switched salons again. The second time at that place, the side of my jawline developed a type of dermatitis that took almost a month to go away. That’s when I finally called it quits. I was 45, female, and had to grow out my roots to at least 2 inches and then get my hair cut super short to get all the colored hair cut out.

I also wore makeup for years until I had LASIK surgery and couldn’t wear makeup for a few days post surgery. I went a week without any makeup and realized my skin looked and felt so much better without it. I wore minimal makeup from then (around 2007) and stopped all makeup and skin care products except for Vanicream for people with allergies when my Lyme symptoms started in 2009. The allergist I saw when my Lyme symptoms started sternly ordered me to obey his guidelines about products. I am so glad I obeyed. I had no idea until then that I was allergic or sensitive to all that stuff.

I said all that to say this. Hair dye and any kind of personal products and even medicine can have parabens and toluene. I very likely simply have a crapload of toxicity from multiple sources and probably have genetically impaired detoxification. Since I have not had testing, I don’t know the actual issues or what to do about it.
Posted 4/30/2021 8:05 AM (GMT -5)
I keep looking at my OAT test for the indicator of good bacteria levels. I can’t find it. For some reason I had the impression that my good bacteria levels were very low, but I can’t find it anywhere.
Posted 4/30/2021 8:21 AM (GMT -5)
Sorry I am posting excessively here, but I wanted to comment regarding the CK quote. When my “IBS” symptoms started, I went through a long period of probably a couple years where I wondered if I had Lyme palsy of the gut, because I felt no peristalsis or movement in my intestines until it was time for a bowel movement.

After taking a month or longer regimen of Candicid Forte supplement, I had a massive expulsion of greenish yellow stringy seaweed looking stuff. Still can’t say for sure what it was, but it was definitely pathogenic. The night before the expulsion, I had bloating like a pregnant woman - upper and lower abdomen.

I have asked others with known Candida what it looked like in stool, and at least 2 people described it as white and cheese like, which was not what I saw. I definitely have ropeworm, and it has responded to both antiparasitic and antifungal herbs.

Anyway, after that expulsion, I was able to move my bowels normally for about 4 days without taking any magnesium or other laxatives. That was the first time in 2.5 years, but the effects didn’t last. That let me know that whatever was causing my recalcitrant constipation was NOT due to nerve damage or paralysis in my intestines.

After taking Nitrofurantoin early this year for a UTI, I experienced a similar effect and was able to move my bowels unaided for a week. I passed a lot of ropeworm during and after taking that drug. GA Hunter said that drug was killing a lot of bad bacteria. I had a lot of GI symptoms during and after that drug. Wish I could take it again.

I understand the frustration of trying to solve gut issues.
Posted 5/1/2021 5:28 AM (GMT -5)

WalkingbyFaith said...
I keep looking at my OAT test for the indicator of good bacteria levels. I can’t find it. For some reason I had the impression that my good bacteria levels were very low, but I can’t find it anywhere.

if its the great plains labs - there is a page that is titled "Intestinal Microbial Overgrowth" on mine its page 1 with metabolites numbered 1-18
Posted 5/1/2021 5:34 AM (GMT -5)

WalkingbyFaith said...


Anyway, after that expulsion, I was able to move my bowels normally for about 4 days without taking any magnesium or other laxatives. That was the first time in 2.5 years, but the effects didn’t last. That let me know that whatever was causing my recalcitrant constipation was NOT due to nerve damage or paralysis in my intestines.

.

just trying to follow your reasoning here WBF - not saying you are wrong - but its not jumping out at me. would be interested to hear a bit more of how you came to this conclusion.
Posted 5/1/2021 6:58 AM (GMT -5)
Hi, Garzie!

Because I had recalcitrant constipation for so long, I wondered if I had some kind of nerve damage or palsy of the gut. When I had this breakthrough after treating pathogens, I realized that nerve damage wasn’t the cause. Pathogens were the cause of the intestinal issues I was (and still am) having. For me, it seems most strongly related to ropeworm. In fact, this first expulsion was the result of my first attempt at treating gut pathogens.
Posted 5/1/2021 7:05 AM (GMT -5)

Garzie said...
if its the great plains labs - there is a page that is titled "Intestinal Microbial Overgrowth" on mine its page 1 with metabolites numbered 1-18

Ah, I found it. It’s #14 - DHPPA (Beneficial Bacteria). My result was very low at .04 with range at <.38. On the bar that shows the reference range, my result is on the very low end of the bar. While I do have some of the bacteria markers, my clostridia markers were all normal.
Posted 5/1/2021 10:53 AM (GMT -5)

WalkingbyFaith said...

I realized that nerve damage wasn’t the cause. Pathogens were the cause of the intestinal issues I was (and still am) having.

this is the bit i am struggling with in terms of the logic.

i think in the case of SIBO / gut dysbiosis - even though the mechanism seems to be nerve damage due to an auto-immune type reaction
- pretty much all people with SIBO do get at least some relief by changing their diet eg eating less carbs is a typical one.
-and also from gut pathogen/ gut bacteria overgrowth treatments. notably rifaximin.
so its clear that some kind of interaction with the gut bacteria is involved in the chain of mechanisms in SIBO/Dysbiosis and the symptoms can be modulated by interventions that affect gut bacteria to some degree.

again - not saying you are wrong and i am right - more just interested in the discussion - but on the face of it your experience seems to fit with the above mechanism / rather than counter to it - no?
Posted 5/1/2021 1:31 PM (GMT -5)
Well, I don’t know how else to say it. I guess the pathogens could be affecting nerves somehow, but it doesn’t feel that way. I don’t know if I have SIBO or not. I may. I may not. I have never been tested. My OAT results left me with more questions than answers.

What I know I have via testing and visible evidence is a very heavy load of mycotoxins from mold and an endless supply of ropeworm. When someone decides to take ropeworm seriously and do some medically accepted research, I will be very glad.

Ropeworm could conceivably block and restrict the passage of poop. It attaches to the walls of the intestines. Think tangled hair and soap scum clogging up the shower drain.
Posted 5/1/2021 4:08 PM (GMT -5)
thanks for coming back WBF - yes - i believe that is what the latest research into SIBO / Dysbiosis is pointing to - i think their theory is some bacterial by product or immune reaction to it is leading to nerve damage...
Posted 5/1/2021 5:03 PM (GMT -5)
I just ordered the smart test that Pimental was speaking about that tests for the antibodies, great find!

https://www.ibssmart.com/
Posted 5/2/2021 7:01 AM (GMT -5)

dcd2103 said...
I just ordered the smart test that Pimental was speaking about that tests for the antibodies, great find!

https://www.ibssmart.com/

cool! - keen to hear your results.

i have also emailed the UK clinic that is acting as an agent / consult for this test to see what the prices and process is.

thinking about this a little more - I'm interested in understanding how we should interpret the results in the case of chronic lyme disease.
it seems most of the long haulers here have gut issues - often resembling SIBO / IBS - or at least that the impression i get reading this or other similar forums.

so if someone has lyme - and a positive result on this test for anti-vinculin - are we to conclude that:
- Lyme caused the anti-vinculin reaction ( borrelia have been shown to infect the gut tissues via biopsy)

- or that Lyme was kind of there in the background - and a food poisoning event caused the ant vinculin reaction - and that messed up the immune system enough for lyme to take hold / become chronic ( lyme seems to take advantage of any pre-existing inflammatory event - eg injuries etc)

- or that borrelia is not really a big driver in most of us in the chronic phase ( sacrilege i know!) - and even though its there - its not really the thing driving our symptoms - but this gut issue is (its well demonstrated that gut dysbiosis can drive lots of systemic effects)

also i note that the test page says
"ibs-smart™ is applicable to patients with diarrheal symptoms and diagnoses diarrhea-predominant or mixed-type IBS (IBS-D or IBS-M). The biomarkers measured are not common in patients with constipation-predominant IBS (IBS-C)."

so this seems to be implying that - though they have found a marker that certainly seems highly diagnostic of IBS-D or Mixed - it doesn't seem to work for other types

and in his talks Pimental mentions typical bugs that are known to trigger this reaction e.g. pathogenic e-coli - but does this mean other pathogens that can infect the gut can also trigger this same response - eg Borrelia or Bartonella - i don't see why not - or maybe they trigger different, but as yet undiscovered auto-antibodies via a similar mechanism - but we just don't know about them yet..../

very interesting stuff - and great to have more pieces of the puzzle.
Posted 5/2/2021 7:15 AM (GMT -5)
This are good points an very interesting. I will see what my results are and go from there, will keep you posted.

I’ve ordered the test but I will have to go to another state to do it, because New York is a liberal hellhole w their hands in everything.

I’ve read a lot about this Partially Hydrolyzed Guar Gum and I’ve started it. From what I can tell it is one of the best touted prebiotics out there w lots of health benefits, antimicrobial being one of them.
Posted 5/2/2021 9:49 AM (GMT -5)
I had terrible stomach issues for years and it got better by treating parasite and dental-I went to a clinic in St. Louis and worked with that doc. Strangely enough I met some ex navy seals there who had same stomach issues-that were cured by that clinic
Posted 5/2/2021 3:53 PM (GMT -5)

dcd2103 said...
This are good points an very interesting. I will see what my results are and go from there, will keep you posted.

I’ve ordered the test but I will have to go to another state to do it, because New York is a liberal hellhole w their hands in everything.

I’ve read a lot about this Partially Hydrolyzed Guar Gum and I’ve started it. From what I can tell it is one of the best touted prebiotics out there w lots of health benefits, antimicrobial being one of them.

please do dcd - very interested to hear how you get on

i have written to the smart ibs testing company to see if they can shed any more light on some of my questions. i think its a bit outside their target scope - but it doesn't hurt to ask and will let you know if any thing useful comes back.

ps. maybe go easy on the PHGG to begin with - too much too soon of most prebiotics and probiotics can cause flares in symptoms for a lot of people who are sensitive to stuff.

rooting for you!
Posted 5/2/2021 5:50 PM (GMT -5)

dcd2103 said...
I’ve ordered the test but I will have to go to another state to do it, because New York is a liberal hellhole w their hands in everything.

That made me laugh. smile

Forgive me if this is a repeat, but are you familiar with Michael Ruscio, DC? Over the years, I've loosely followed his work. In the past year or so, it seems he's put a lot more focus into helping patients with gastrointestinal problems.

Though I've not read it, he's written a book titled "Healthy Gut, Healthy You."

He also has a podcast titled "Dr. Ruscio Radio" that can be found on his website, iTunes, Stitcher, and other such platforms. On the "Podcast" section of his website, though, there's a link to submit a question via voicemail or text, for consideration of being addressed in an upcoming "Listener Questions" podcast episode.

He can also be found as a guest on other podcasts and across a variety of YouTube videos.

One of the chief reasons I like Dr. Ruscio is his caution -- almost an unwillingness -- to make any definitive statements about most things related to foods, supplements, medications, testing, etc. While some could view that as a negative, I consider it a positive, as he's only willing to speak with certainty about the things he's observed clinically or to which he can point to in the medical literature. In my opinion (which is meaningless), we need fewer "Gurus" that try to be masters of everything and become inflexible in their views and unable to hear new evidence or update their position.

Allison Siebecker, ND is another person frequently touted as being a top SIBO doctor. She has her own website, of course, online course for patients, and, of course, can be found on many podcasts and YouTube videos.

Because she's in Rye Brook, NY, I'll also mention Susan Blum, MD. I discovered her 10+ years ago, but haven't followed her in several years. However, she's always remained in the back of my mind, because I found her intelligent and I liked that she practices functional medicine -- a term which, sadly, I don't really value any longer. Though she's doesn't focus solely on gut health, it is a component of her practice. Mainly, I'm mentioning her, due to her location.

On one hand, I hate to suggest more people, because I don't want you to waste more precious time, resources, and hope going down additional rabbit holes. Plus, it's clear you're very smart and you've done (and, still do) a lot of research. On the other hand, if I feel there's even a remote possibility that something I share might help, I feel obligated to mention it. I'd like to see you get the breakthrough you need and deserve to get you to the next level.

Take care, amigo.

Dude
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