Paraprevotella: the cause of my atypical ME?

[Cheesus]

@SB_1108

That thread is the very definition of TMI

I wonder if it could have been more effective if done in a clinic? The reason I say that is because there would presumably be a higher volume transplanted than via capsules. I noticed the study you cited regarding the efficacy of capsules in treating C. Difficile, but this could be different.

Also i wonder if a clinic is able to more effectively transplant anaerobic bacteria than DIY capsules?

Have you considered helminth therapy?

 

[alicec]

Also i wonder if a clinic is able to more effectively transplant anaerobic bacteria than DIY capsules?

As I understand it, this is definitely the case. The main problem with DIY is the inability to preserve anaerobes.

 

[SB_1108]

@SB_1108
Have you considered helminth therapy?

I have considered it but it is difficult to gain access to helminths.

As I understand it, this is definitely the case. The main problem with DIY is the inability to preserve anaerobes.

Can you tell me more about this? I'm not aware of any methods that Taymount uses that would better preserve anaerobes?

I did both the top down and bottom up FMTs. So I pretty confident volume isn't the issue.

I have read that Taymount clinic will try to analyze your microbiome to see what you are missing and match you with four donors who have those missing bacteria to give you the best odds for success. I'm not certain they use this approach but that would definitely be helpful!

 

[alicec]

Can you tell me more about this? I'm not aware of any methods that Taymount uses that would better preserve anaerobes?

I don't know anything about that clinic. I was speaking generally based on what I have read in a couple of scientific papers and info from the Centre for Digestive Diseases in Sydney Australia, which has done a lot of pioneering work on FMT.

You would need to ask any specific clinic to clarify their procedures for protecting anaerobes.

 

[SB_1108]

I guess what I meant to say is, I've not read anything specific regarding DIY FMT being less effective than what is offered by medical providers including Dr. Borody or Taymount clinic... the success rates are generally the same. However almost all current research is based on cdiff treatment.

 

[keenly]

PC can cause B2 deficiency

How?

 

[Gondwanaland]

How?

It is a methyl donor and puts methylation into gear. B2 is the backbone of the Krebs cycle activating all the other vitamins putting the phosphate in them.

 

[max_yazhbin]

I am a man, 25, suffering from extremely severe, atypical CFS/ME with objective abnormalities. My illness was triggered three years ago when herbal antimicrobials caused me to crash from prodromal CFS/ME into serious illness. Strangely, the antimicrobials caused very foamy urine. The foam declined but did not disappear after discontinuing the antimicrobials. Testing is consistently negative for proteinuria (excess protein is the only known cause of foamy urine). Probiotics cause dramatic fluctuations in this symptom, which is sometimes seen on Lyme and Candida forums.

A year after onset I discovered a liver enzyme (ALT) was elevated. All known causes are ruled out. After a period when the foamy urine was considerably elevated, my ALT went from ~100 to 330 (reference range 0-40). The foam declined and my ALT fell back to ~100.

Because antimicrobials triggered the idiopathic foamy urine, I hypothesised that the cause of my atypical CFS/ME and elevated ALT is a novel bacterial toxin that is visible as foam in my urine. As probiotics can influence this symptom, I surmised the bacteria is in my gut. To investigate, I had my gut microbiome profiled as part of the British Gut Project at Kings College London.

According to my report, the Gram-negative genus paraprevotella comprises 0.5% of total bacteria in the average gut. In my gut, paraprevotella comprises 12.5% of total bacteria. Very little is known about paraprevotella and it produces a number of "unknown fatty acids."

In addition to this unusual overgrowth was a marked lack of diversity. Two genera, bacteroides and paraprevotella, account for ~70% of total bacteria. Furthermore my PCR did not detect any lactobacilli, bifidobacteria, escherichia, butyrivibrio, veillonella, streptococcus, peptococcus or even prevotella. There are possibly other genera absent that I am not familiar with. The test is sensitive to genera accounting for >0.01%. My gut is radically different to both patients and controls in existing research on the gut microbiome in CFS/ME.

I have no GI symptoms at all.

My plan is to have a Fecal Microbial Transplant at the Taymount Clinic, but I am not nearly well enough at the minute. I am seeing some green shoots of improvement 2 months into a methylation protocol after 18 months of no change.

What do you all think?

ETA: If you want to a full profile of the bacteria in your gut, you can get a 10% discount at uBiome with this link: http://ubiome.refr.cc/T3B95SK

Would you be more specific by what you mean by "prodromal CFS/ME"?

You mention all known causes of high ALT and liver problems were ruled out. What you tell me what was considered?

Would you tell me more about the methylation protocol your doing?