S-VV's desperation medicine

[ljimbo423]

One interesting thing I have noticed is that some days I get mini-remissions, with a noticeable improvement in symptoms. While I'm normaly constipated, when these mini-remissions occur, I have diarrhea for the day. This small anecdote has convinced me that the gut plays a pivotal role, and that there is some hope for my microbiome. Have you noticed something similar?

Something similar maybe. Some days when I get a flaring of gut symptoms and have to make several trips to the bathroom. I feel noticeably better, once all is said and done.

 

[S-VV]

You might be right that you were experiencing lactic acidosis from the probiotics. My view is that both probiotics and antibacterial herbs kill off gram negative bacteria in the gut.

The lipopolysaccharides(LPS) from the bacteria that are killed off, get into the bloodstream.

Once in the bloodstream, the LPS cause an up-regulation of pyruvate kinases. Which impairs PDH and causes the switch to anaerobic glycolysis that Fluge and Mella found in there study.

This switch to anaerobic glycolysis causes an increase in lactic acid to be created from pyruvate because it can't be converted to Acetyl CoA and used in the krebs cycle.

So when I use a muscle say for brushing my teeth or almost any muscle, lactic acid builds up very quickly from anaerobic glycolysis. Especially when LPS levels are high. Causing the tell tale burn, ache etc. from it. I experience this quite often from killing off bacteria in my gut with antibacterial herbs.

I think Fluge and Mella talk about how lactic acid levels in ME/CFS are normal until there is a bigger demand for energy in the muscle. Then it rises fast. Which would make sense if the lactic acid was being produced in the mito. when there is a bigger demand for energy.

Damm, I almost forgot about LPS. And we were focusing on them just a month go! This disease really has 1000 faces. It may be possible that LPS triggered my acidosis, but would it last for two weeks after discontinuing probiotics? Also I had die off symptoms at the begining of the probity experiment. They lasted for about 3 days and felt far more flu-like than the acidosis, which only appeared after a week of probiotic use, and remains to this day.

i am experimenting with C. butycurum which consumes lactic acid, and so far, my aerobic threshold seems to have improved about 15%. Of course, it could be the butyrate strengthening the thigh junctions of the intestinal wall.

 

[S-VV]

I found a reddit post that may interest you: https://www.reddit.com/r/HumanMicro...r_thoughts_on_my_diy_fmt_preps_and_dysbiosis/

Here are some extracts:

"went to an integrative doctor who thought I might have bacterial overgrowth and I took 6 weeks of Doxycycline. After 5-6 days the bloating and diarrhoea were gone and my systemic issues would recover by about 70% after 4 weeks (especially the annoying brain fog was gone). After ten days off of Doxy every symptom returned and I was sick again."

" I tried an FMT with my 3 year old daughters stool and to my surprise it worked very well - within 2 hours my hunger feeling/apetite returned and my bloating was completely gone! I tried this three more times and every time I had a complete 24-48 hours relieve of gut symptoms (but I kept feeling fatigued and weak)"

"I went on another round of Doxy - I'm on it for almost 8 weeks now and I'm back to my 70% healthy self"

 

[ljimbo423]

It may be possible that LPS triggered my acidosis, but would it last for two weeks after discontinuing probiotics?

As I understand it, probiotics can last in the GI tract from 1-3 weeks after they are stopped. They don't colonize the gut. So the time frame of 2 weeks sounds rate on the money.

 

[Wolfcub]

This is so interesting.
Doxy is also used for Lyme. The treatment period can be quite prolonged as far as I know.

 

[S-VV]

I know some people who take doxy chronically. As well, an old cure for rheumatoid arthritis was minocycline for three years.

But I plan to take the ABx in bursts of 14 days then 14 days rest to destabilize the aberrante microbiome and allow it to return to a better state

 

[S-VV]

I found something interesting: fluconazole and doxy are synergisyic against fungi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3393430/

This speeds up phase 1 considerably. Today I start Fluconazole + Nystatin and one or two days later I'll start doxy

 

[S-VV]

My tentative 14 day burst 1 will be :

- 4 days doxy only
- 10 days doxy + metrodianazole

All the while taking fluco + Nystatin.

I will also take 900mg UDCA for liver support

 

[ljimbo423]

Today I start Fluconazole + Nystatin and one or two days later I'll start doxy

I look forward to seeing how you do.

 

[S-VV]

Thanks!!! I will keep you updated

 

[Wishful]

I'm fairly sure that I took nystatin and possibly fluconazole in the past. It was years ago, but they sound very familiar. They didn't help my ME symptoms though. I don't recall any negative effects from them. I think I was testing the hypothesis of fungal infections being a cause of my symptoms (this was before I knew I had ME).

It's these negative responses to microbiome affecting treatments or changes that lead me to believe that the microbiome isn't part of the core dysfunction of ME. I think it's more likely that ME causes some changes in the microbiome, and also makes some people sensitive to specific toxins or allergens from some bacteria or fungi (or even viruses that depend on specific bacteria). The latter would explain why some people do get partial or full remission from microbiome treatments (that includes supplements and diet changes), and why most of us don't.

People who do notice significant changes in symptom severity from microbiome affecting changes should probably experiment more with that. If you've made some drastic changes or treatments and had no effect, further experimenting along those lines is probably less likely to be helpful.

 

[Wishful]

I think a low carb diet, as Ken Lassesen talks about, is crucial to getting rid of dysbiosis and keeping the dysbiosis from returning. Like you though, I don't do well with keto at all. Low carb I'm fine with.

Since we don't know which bacteria are 'bad' for ME, how can anyone claim that carbs should be avoided? Furthermore, our personal bacteria, even from the same species, can be quite different in what they produce and what they eat and how they interact with other microbes. So, for one person, low carbs might shift the microbiome in a way that reduces ME symptoms, while for another person, it might increase them. I expect that the optimum diet for reducing ME depends on the individual, and varies greatly from person to person.

I've varied my diet considerably over the years. None of the changes reduced my baseline symptoms. A high fat diet (not sure whether it was true keto) seemed to increase them. I'm presently eating a fairly high-carb (whole grains) diet with some meat&fat and not much vegetables or fruits, and that's no worse than any other diet I've followed.

 

[ljimbo423]

Since we don't know which bacteria are 'bad' for ME, how can anyone claim that carbs should be avoided?

I don't think ME/CFS dysbiosis is different than dysbiosis in people without ME/CFS. As far as what is needed to reverse it.

Experienced functional medicine doctors that have spent years or even decades treating dysbiosis have learned that carbs make SIBO/dysbiosis much worse.

I expect that the optimum diet for reducing ME depends on the individual, and varies greatly from person to person.

I think the optimum diet for a healthy person without chronic/reoccurring, SIBO/dysbiosis does vary dramatically. Once chronic SIBO/dysbiosis is well established.

As has been found in ME/CFS studies. People usually need a fairly low carb diet to get rid of the dysbiosis and maintain that.

I've varied my diet considerably over the years. None of the changes reduced my baseline symptoms. A high fat diet (not sure whether it was true keto) seemed to increase them. I'm presently eating a fairly high-carb (whole grains) diet with some meat&fat and not much vegetables or fruits, and that's no worse than any other diet I've followed.

I've experienced the same thing, many times over the years. Diet alone does very little to reverse well established dysbiosis. I once did a keto diet and got the keto flu for about 6-8 weeks and couldn't shake it.

So I thought I was wrong about treating my gut to help improve my health and reverse my ME/CFS. So I went back on my normal carb diet. Within 2 weeks I was mostly bedridden again and I hadn't been for years.

That was huge light bulb moment for me.

 

[pattismith]

@S-VV

I don't know if it is possible to make it without antibiotics.

I was myself concerned by dysbiosis and intracellular infections, so I had to start with four months of Macrolides/Doxy, but it was a really hard time to go through. It definitely cured some spine pain problems, but it took a long time to recover from it.

Did you consider activated charcoal to help dealing with gut bacterial toxins?

 

[ljimbo423]

Did you consider activated charcoal to help dealing with gut bacterial toxins?

I second this motion! I have taken 2.5 grams every day for months now and feel better shortly after I take it almost every day.

 

[S-VV]

I'm fairly sure that I took nystatin and possibly fluconazole in the past. It was years ago, but they sound very familiar. They didn't help my ME symptoms though. I don't recall any negative effects from them. I think I was testing the hypothesis of fungal infections being a cause of my symptoms (this was before I knew I had ME).

It's these negative responses to microbiome affecting treatments or changes that lead me to believe that the microbiome isn't part of the core dysfunction of ME. I think it's more likely that ME causes some changes in the microbiome, and also makes some people sensitive to specific toxins or allergens from some bacteria or fungi (or even viruses that depend on specific bacteria). The latter would explain why some people do get partial or full remission from microbiome treatments (that includes supplements and diet changes), and why most of us don't.

People who do notice significant changes in symptom severity from microbiome affecting changes should probably experiment more with that. If you've made some drastic changes or treatments and had no effect, further experimenting along those lines is probably less likely to be helpful.

Good point. The question of what is downstream and what is upstream has crossed my mind many times. However, the fact that the start of my symptoms relates directly to diet change, antibiotics and probiotics, all of which directly change the microbiome, leads me to believe, that for me its the main cause.

On the other hand, many people experience great success with IVIG rituximab and plasmapheresis. I don't think they would improve my situation much, so theres the subset issue.

 

[S-VV]

@S-VV

Did you consider activated charcoal to help dealing with gut bacterial toxins?

Yes! In fact, this summer, when my aerobic capacity was better, I used to take activated charcoal, and 1.5 hours later, when I suspected it had reach the large intestine, I went for a bike ride. I did so hoping that it would diminish bacterial translocation

 

[S-VV]

@S-VV
I was myself concerned by dysbiosis and intracellular infections, so I had to start with four months of Macrolides/Doxy, but it was a really hard time to go through. It definitely cured some spine pain problems, but it took a long time to recover from it.

Thats a long time! did you take any breaks in between, or noticed any change in bowel habits?

 

[S-VV]

This article is extremely interesting:

https://www.cell.com/cell/pdf/S0092-8674(18)31108-5.pdf

Post-Antibiotic Gut Mucosal Microbiome Reconstitution Is Impaired by Probiotics and Improved by Autologous FMT

Probiotics are widely prescribed for prevention of antibiotics-associated dysbiosis and related adverse effects. However, probiotic impact on post-antibiotic reconstitution of the gut mucosal host-microbiome niche remains elusive. We invasively examined the effects of multi-strain probiotics or autologous fecal microbiome transplantation (aFMT) on post-antibiotic reconstitution of the murine and human mucosal microbiome niche. Contrary to homeostasis, antibiotic perturbation enhanced probiotics colonization in the human mucosa but only mildly improved colonization in mice. Compared to spontaneous post-antibiotic recovery, probiotics induced a markedly delayed and persistently incomplete indigenous stool/mucosal microbiome reconstitution and host transcriptome recovery toward homeostatic configuration, while aFMT induced a rapid and near-complete recovery within days of administration. In vitro, Lactobacillus-secreted soluble factors contributed to probiotics-induced microbiome inhibition. Collectively, potential post-antibiotic probiotic benefits may be offset by a compromised gut mucosal recovery, highlighting a need of developing aFMT or personalized probiotic approaches achieving mucosal protection without compromising microbiome recolonization in the antibiotics-perturbed host.

 

[S-VV]

There is a lot of talk of bistability and attractor points lately concerning the metabolic trap, and I think that the same concepts apply to the microbiome. Short, cycled antibiotic pulses push the microbiome out of the dysbiotic state and give the body a chance to settle in the eubiotic (normal) attractor.

So is seems that a possible key is pulsed antibiotics, followed by a recovery period, this pattern repeated many times. If after the antibiotic one takes probiotics, especially if they are not human sourced, they will just continue disrupting the microbiome, and never give it the time to reach a good steady state.