Advice Re: Gut Bacteria

[Daffodil]

@kangaSue may i ask how ur me/cfs started? was it sudden onset ?

also, how did you find your donor and who processed the poop? which tests did you give your donor if any?

thanks!

 

[Daffodil]

@kangaSue may i ask where you heard that females shouldnt be used as donors? Taymount also does not use females i have heard

 

[kangaSue]

may i ask how ur me/cfs started? was it sudden onset ?

As I mentioned in my last reply, I don't actually have ME/CFS. I have renal Nutcracker Syndrome which can be a cause of just chronic fatigue and has been wrongly diagnosed as CFS in a number of cases I know of.

how did you find your donor and who processed the poop? which tests did you give your donor if any?

My donor was a blood relative whom I knew had a very healthy lifestyle with no vices of any concern. They were already a registered blood donor so had been screened for any blood borne nasties as part of that process and the only test I had done was a Faecal multiplex PCR stool test.

I just did the diy process mentioned on the Power Of Poop website, mix fresh stool and water in a blender, filter out the solids, and syringe into the bowel via my tube.

I wouldn't mix it with a blender if (or when) I do it again. I'd use a strong zip lock and manually combine the brew so as not to introduce too much oxygen into the slurry.

may i ask where you heard that females shouldnt be used as donors? Taymount also does not use females i have heard

It was something I read from a couple of different sources but can't recall off hand exactly which articles were making the suggestion. The context was more about who the ideal donor would be though and we don't always have the luxury of that option so if the best (or only) option was female, I wouldn't see that as being a deal breaker. If you can find a vaginally-born, healthy non-vegan 20-30 y.o. male who's never used antibiotics before though, you've struck the jackpot!

 

[Daffodil]

As I mentioned in my last reply, I don't actually have ME/CFS. I have renal Nutcracker Syndrome which can be a cause of just chronic fatigue and has been wrongly diagnosed as CFS in a number of cases I know of.

My donor was a blood relative whom I knew had a very healthy lifestyle with no vices of any concern. They were already a registered blood donor so had been screened for any blood borne nasties as part of that process and the only test I had done was a Faecal multiplex PCR stool test.

I just did the diy process mentioned on the Power Of Poop website, mix fresh stool and water in a blender, filter out the solids, and syringe into the bowel via my tube.

I wouldn't mix it with a blender if (or when) I do it again. I'd use a strong zip lock and manually combine the brew so as not to introduce too much oxygen into the slurry.

It was something I read from a couple of different sources but can't recall off hand exactly which articles were making the suggestion. The context was more about who the ideal donor would be though and we don't always have the luxury of that option so if the best (or only) option was female, I wouldn't see that as being a deal breaker. If you can find a vaginally-born, healthy non-vegan 20-30 y.o. male who's never used antibiotics before though, you've struck the jackpot!

ty hon. sorry i forget everything within 1 min of being told lol..... i searched for several months. i was a nightmare really. but finally found someone. i had to offer quite a bit of money sadly. still have to have her tested too. waiting until after she gets the vaccines.

i appreciate all the info...you are very intelligent. i am debating whether to use vanco or not before the FMT. i might skip it because there isnt any literature showing it makes that much of a difference. i was thinking of phages but my doc wont let me import. i will just do colonics, moviprep and the FMT's i guess. hard to get hopes up at this point. i hope you are able to address you other health concerns. i am glad at least all that effort from FMT did something positive

 

[kangaSue]

i will just do colonics, moviprep and the FMT's i guess.

I think it'd be worth just doing a bowel purge with moviprep first and see what improvement you get. Some people have marked improvement in just doing this, more just in their GI symptoms, but the flow on of less bacterial toxins circulating around may have a moderating effect on other ME/CFS symptoms.

You'll know within a couple of days if the prep has been significantly beneficial and if not, you can just kick off with FMT (I think even Dr Borody suggests having a 2 day wash-out period between taking antibiotics and starting FMT, not 100% sure on that though)

i appreciate all the info...you are very intelligent

I don't see myself as being particularly intelligent, just well read because I've not been greatly helped by conventional medical advice either.

 

[Daffodil]

@kangaSue i just have to wonder if australian stool bank criteria is questionable. for someone with such expertise, barody doesnt get great results. i run into quite a few people who went to him, did the whole regimen, got nothing out of it. some got temporary improvements. the odd one went into a real remission. i think australian stool banks accepts donors up to age 60 or something. one woman recently was cured after going to another GI doc in Australia and using her own donor.

i am not sure if i have heard of anyone with EBV trigger who recovered with FMT. Its mostly people whose illness began with antibiotics or some kind of stomach bug/diarrhea type of thing. But my gut is most definitely abnormal, thats for sure.

I will try and do 18 months too if i can afford it...and see what happens. ugh. i am not quite sure how i will get used to working with poo everyday LOL

 

[kangaSue]

@Daffodil It does appear that having a blood relative or a partner as a donor can make for a better outcome but not too many conditions put into remission with FMT stay that way without doing an occasional maintenance FMT from what I can see.

i am not quite sure how i will get used to working with poo everyday LOL

The first couple are the worst but it becomes second nature once you get into a routine. You only need to do it daily for the first 10 or 14 days though.

 

[Daffodil]

@kangaSue thanks i have read quite a few case studies where people with C Diff get FMT and other illnesses go into complete remission and stay that way for maybe 2 yrs...or for as long as they are followed up. There is a case with epilepsy, bipolar, me/cfs, fibro....they are out there. They just got very lucky and got the organisms they needed I guess....but many also need booster FMT's, its true.

I have a gas mask on hand. I thought of making a glove box using a large plastic container but I didnt do it. When I visited India, I got used to cow poop. It didnt seem too offensive after a while. Hopefully, this will be similar. But I bet not lol

I do plan on doing it daily for a long time.

Yes, I have also heard that relatives are best but I do not have that option.....I am worried my prospective donor, who grew up in a developing country, will end up having blasto or something. Then I won't know what to do.

 

[acrosstheveil]

@Daffodil In all honesty, FMT was well worth the effort just for stopping the pseudo obstruction events as these cause the worst abdominal pain imaginable when they strike. I saw a few people saying that it took 18 months of FMT to get their GI problems into remission so I figured I might as well go the distance too.

There's a whole lot still evolving with FMT though and things like the fungal balance and amount of bifidobacterium in a donors stool can influence whether FMT is going to be successful for you or not.

Yes, it was their own unhealthy stool. Stool in the colon has a much higher bacterial count and maybe a different diversity, so maybe it's this, or it just contains something in the viral or fungal mix that is lacking in sufficient quantity in the small bowel in the first place.

That's something else I should have mentioned. I don't think I ever had a chance of FMT working for my gut issues as I later found out that I do have a physical vascular abnormality (renal Nutcracker Syndrome) that can cause a state of constant low grade abdominal inflammation (and gastroparesis in some cases), and can involve vagus nerve dysfunction.

I know I have a problem with the vagus nerve anyway as it's generally involved in cases of gastroparesis, but I'm also diagnosed with (idiopathic )autonomic neuropathy (cardiovagal dysfunction) as well.

(ps I don't actually ME/CFS either, renal Nutcracker Syndrome can be a cause of chronic fatigue that can be wrongly diagnosed as CFS)

huh. maybe that explains why my old dog would eat his poop