Fecal transplant: Did anyone do a fecal transplant... - LUPUS UK

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Fecal transplant

miccika1 profile image
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Did anyone do a fecal transplant for any reason? If yes, what were the results?

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miccika1 profile image
miccika1
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68 Replies

Hi miccika

Usually fecal transplant use in case of pseudomembranous colitis(due to clostridium deficile)

And consider at last line for management

Aim to return normal bowel flora

miccika1 profile image
miccika1 in reply to

That's true, but recently there has been a lot of research with different autoimmune diseases. For example multiple sclerosis.

overnighthearingloss profile image
overnighthearingloss in reply to miccika1

I haven't had one or know anyone who has had one. But maybe I have seen some of the same things as you that point to differences in the microbiome being common with certain illnesses.

I think a fecal transplant may be a quick fix in some instances. But the microbiome we each have is somewhat dependent on what we feed the little critters. So I wonder how effective longterm a fecal transplant would be without providing the good microbiome with what it requires to thrive.

Barnclown profile image
Barnclown in reply to overnighthearingloss

So True...

+ also our microbiome is dependent on what meds we must take in order to survive at all eg now i’m older, my Primary Immunodeficiency Disease (PID) is so severe that i cannot avoid infections without daily prophylactic antibiotics + 3 weekly IVIG sessions...am V lucky to be in tertiary care @ my univ hospital where super clever clinicians are helping me live on despite childhood onset immune dysfunction & connective tissue disorder-related intestinal failure

overnighthearingloss profile image
overnighthearingloss in reply to Barnclown

I do agree. I think the further you get on the illness path, the more meds and treatments you are on, the harder it is to make any potential changes.

I was terrified when I was taken off of blood thinning medication last year. (Warfarin). But it is a terrible drug to take as it stops you eating freely and possible interactions bind you tightly to certain paths.

Now I am able to consider trying other approaches that were not available to me previously. I still worry sometimes about my safety being away from blood thinning but hope new dietary approaches maybe lessening my threats that put me on the drug in the first instance.

I had another lucky escape some years back following my renal crisis that left me close to dialysis. That too would have severely limited me but I always try to see any positives even when they hide, and maybe it has helped me turn back the tide on certain situations.

I am not suggesting our situations are the same however. Just that I have had some lucky escapes. Maybe I am part feline.

Barnclown profile image
Barnclown in reply to overnighthearingloss

👍👍👍👍Me too: focus on the positives...eg who could ever guess that i’d feel better now than i have since childhood despite intestinal failure meaning i can’t digest food & must rely on EEN long term...i’m FLABBERGASTED 🤗

AND 👍👍👍👍 i’m part feline too, but almost used up those 9 lives, so am counting on there being more available 😉🍀😘

overnighthearingloss profile image
overnighthearingloss in reply to Barnclown

I don't know if he will be for you but I have been listening to Bruce Lipton. Certainly seems a bit woo woo the first time you come across him. He comes from the stance of thoughts create reality. Lots to agree or disagree with.

Barnclown profile image
Barnclown in reply to overnighthearingloss

🤷🏼‍♀️👍 had a feeling i’d been doing some pretty effective self-programming 🤖🤡❤️🍀

whitegato777 profile image
whitegato777 in reply to overnighthearingloss

I believe we do attract things in our reality. But i still have problems with the positive thinking law of attraction stuff. Ive researched alot about physiology and The 1st thing I think of when somebody tells me to just think positive is, let me give you some meth and And while you're high and your bodies releasing chemicals try to think positive stay calm and go to sleep.. It's just not gonna happen. Im not Saying you shouldn't. Is just for me only goes so far

overnighthearingloss profile image
overnighthearingloss in reply to whitegato777

When I first came across Bruce he was too much for me. It was quite a while before I listened to any of his stuff again. But he ventures into some really interesting areas. He started out with a purely scientific biologist background and now some of his stuff is potentially touching on quantum theory.

I dont pretend to be an expert on these things myself, but he has a huge amount of info available for digesting and some of it is just mind blowing, when you consider where the mainstream is at at the moment.

If/when you have some time it's worth seeing if you can absorb any of his shorter talks.if there is anything to the subjects he touches on it's going to open up approaches that have not previously been considered. If the current big players allow it.

miccika1 profile image
miccika1 in reply to overnighthearingloss

It is dependent on diet but also what bacteria you can feed. If we have only 10 different ones that are dominating and killing off any other ones then no matter what you eat will not increase diversity.

in reply to miccika1

hmmmmm

Ok it still under trial and no strictly approved for multiple sclerosis

miccika1 profile image
miccika1 in reply to

Only approved illness for fecal transplant is for c.difricile infection. All others including lupus is experimental, but I see people getting desperate and doing it themselves and many report good results for different illnesses, but haven't heard any on lupus yet.

in reply to miccika1

Im lupus there is a promise trial-for using metformin and active sugar based on cells depleting from glucose can change their physiology

Roarah profile image
Roarah

My rheumotologist works in a lab that is running multiple studies on gut flora and autoimmune. He encourages a diet high fiber and resistant starches to help maintain balanced bacteria. I have been eating 40 grams of dietary fiber daily and my APS antibodies drop 115 ug. In 12 weeks. I am waiting to see other tests like my ANA next month. There are other ways to try and improve gut health first before investigating a fecal transplant.

miccika1 profile image
miccika1 in reply to Roarah

I tried many things over the last two years. Im my case i have concluded that no matter the diet, probiotic or prebiotics the gut flora is hard to change. Im not having high hopes in fecal transplant, but it's an easy thing to do at home, and low risk in my opinion.

OneLove2019 profile image
OneLove2019 in reply to miccika1

Same, in fact, fiber seems to make things worse for me causing painful bloating, gas swelling and I seem to remain constipated.

miccika1 profile image
miccika1 in reply to OneLove2019

Same question for you. Did you test for SIBO? I was positive did some treatments like antibiotics and LDN and not bloated anymore.

OneLove2019 profile image
OneLove2019 in reply to miccika1

No, what is SIBO? I do know I have had colon spasms--not so much after I got on prednisone and MTX--but at times was stool was off color...

miccika1 profile image
miccika1 in reply to OneLove2019

Search it online. If you think the symptoms correspond to your symptoms ask your gastroenterologist for a sibo test to confirm. But even without test that is currently not very definitive (and many gastroenterologists do not believe in it's accuracy) you can try fodmap diet and see if you are less bloated or whatever symptoms you have. Hope this helps!

OneLove2019 profile image
OneLove2019 in reply to miccika1

Thank you so much, I exercise and eat very light so it has been very frustrating to no end to have bowel distention to the extent that I have. I will certainly check into it.

OneLove2019 profile image
OneLove2019 in reply to miccika1

Thanks again -- just downloaded a FODMAP cookbook..see how it goes...

whitegato777 profile image
whitegato777 in reply to Roarah

If you have small intestinal bacteria overgrowth carbs and fiber will make it worse. Have you been tested?

miccika1 profile image
miccika1 in reply to whitegato777

Yes i have been tested and posituve for sibo. I took antibiotics for that, then retested in a couple of months an got positive result again. So i tried fodmap diet which helped bloating, but still constipated if not taking miralax. I also took gut bacteria test several times and always show high disbiosis where few bacterias dominate. So all those are my reasons to consider fecal transplant.

whitegato777 profile image
whitegato777 in reply to miccika1

Sibo has a problem with gut motility and ive seen some articles talking about low dose naltrexone to increase motility. Also Dr. Eric berg on YouTube talks about increasing stomach acid and taking ox bile to help combat it. Ox bile i guess is a anti microbial in the small intestine

overnighthearingloss profile image
overnighthearingloss in reply to whitegato777

I watched your posting about LDN on the other thread. I had vaguely heard of LDN in the past but didn't really have any knowledge of what it was.

Wow. That's something that will probably never emerge in mainstream medicine. Just think how many other drugs might lose their footing, and the potential dents to the big pharma giants income streams. So another item that only the knowledgeable will be able to fight for and potentially access.

All empires rise and fall. Maybe it's time cracks started to apply in the current pharma model.

miccika1 profile image
miccika1 in reply to whitegato777

Tried LDN too. Still have about two month worth it it I do think it helped a bit with pushing food out of small intestines as i felt less bloated.

Every time i took some antimicrobials thou my lupus would flare. Im assuming bacteria starts to die and spills out fragments that are similar to my autoantibodies....

whitegato777 profile image
whitegato777 in reply to miccika1

I wonder if activated charcoal would help with some of the toxins

miccika1 profile image
miccika1 in reply to whitegato777

Possibly. I tried taking that once i awhile, not sure if what would happen if i take it at the same time as antimicrobials. My plan was nect time i have a flare and have to get on steroids to take also antimicrobials since i would be possibly controling the inflammation w steroids and at the same time kill of some small intestine bacteria (in case there is stl a problem there, although i think sibo is under control now, since no bloating...)

whitegato777 profile image
whitegato777 in reply to miccika1

I know how you feel. It seems like a never ending battle. Im hoping i can do umbilical cord stem cells this summer and see how I do.

miccika1 profile image
miccika1 in reply to whitegato777

Good luck with that. Let me know how it went.

whitegato777 profile image
whitegato777 in reply to miccika1

I have hope but trying to line everything up has been a pain. Wait for my 401k loan check to come in and my passport to be released. Plus i know results wont be overnight. So it hard to be patient

miccika1 profile image
miccika1 in reply to whitegato777

Oh man, hope it is worth the money and effort.

OneLove2019 profile image
OneLove2019 in reply to whitegato777

Humph--I may need to get that checked out then--fiber, green roughage all the things that is supposed to help always make things worse. I bloat up painfully, get gassy and swell up and yet remain constipated.

miccika1 profile image
miccika1 in reply to OneLove2019

For sure. Easiest way is searchin onlibe for FODMAP Stanford. Then go to images and there us a pdf for stanford fodmap diet. Follow for a month and note if you feel better. Not being constipated is super important as most of immune system lives in the gut. Take miralax daily just so you remain regular

OneLove2019 profile image
OneLove2019 in reply to miccika1

Is Miralax okay to take with MTX?

miccika1 profile image
miccika1 in reply to OneLove2019

yes. I take mmf and it's fine. but of course make sure to mention it to your doctor and always check for drug interactions here: webmd.com/interaction-check...

Barnclown profile image
Barnclown in reply to Roarah

Fingers crossed. How do you calculate your daily fibre quotient?

Roarah profile image
Roarah in reply to Barnclown

Barnclown, first I do not have SIBO or ceiliac disease so I simply eat a cup and half of all bran for breakfast. A cup of steal oats with a cup of blueberries for lunch, a banana around 3 pm and veggies with dinner. I feel really well lately and lost a few pounds as well. I also now meditate and walk daily. Both of these tactics, by reducing stress have also been shown to improve gut health as well.

Barnclown profile image
Barnclown in reply to Roarah

This is REALLY good...this is pretty much how i was eating all my life...it really did help me a lot! I started meditating in my teens: couldn’t have managed with out it over the decades! It’s great to hear good news! Thanks

whitegato777 profile image
whitegato777

I haven't had one but ive heard you can get personality changes and take on that person metabolism. I don't know why you couldn't just do a probiotic retention enema

miccika1 profile image
miccika1 in reply to whitegato777

Because scientists dont know much about microbiota and nobody yet knows all the interactions of hundreds of bacterial strains. That's why taking the mix from a healthy donor makes more sense compared to picking a particular strain

Roarah profile image
Roarah in reply to whitegato777

My doctors advised to use no supplemental probiotics as there is some evidence that overgrowth of popular bacteria that are considered helpful in normal quantities may actually be the cause of different autoimmune disease. That is why he likes to use natural food prebiotics.

miccika1 profile image
miccika1 in reply to Roarah

I agree w your doctor on not using probiotics. Very little is known and we are most probably reacting to one or more of the bacteria in guts, like your doctor mentioned. Having said that im also against prebiotics since you are then feeding your bacteria that might be triggering your immune system. Balanced diet is the only thing im doing plus trying fecal transplant to possibly introduce bacteria that can compete with whichever ones are causing immune reaction. For example i have a high percentage of Proteobacteria that in high quantities is proinflamatory. I do not want to additionally feed it if at all possible...hope you follow my logic :)

rivershark profile image
rivershark

Hi

I had a fecal microbial transplant FMT 4 years ago. Don’t have lupus but was diagnosed with chronic fatigue 5 years ago . Also have coeliac and thyroid issues.

I don’t think it was coincidence that my chronic fatigue and orthostatic intolerance came on after taking a long dose of doxycycline 6-7 weeks. I would never touch these again unless of course in case of infection.

Due to histamine intolerance I found it hard to eat foods good for the gut bacteria (fermented and yogurt ect). Also if you have an inflamed gut it is hard for the new bacteria to survive.

As a scientist by trade I cannot say if I would have improved as much as I have without the FMT as there is no control. But I am able to lead an active life these days and the amazing thing is that my depression that I had for years has lifted. I think this was linked to gut inflammation and gut bacteria too.

I found resistant starch (green banana flour) useful and taking butyrate supplements too.

Take care

miccika1 profile image
miccika1 in reply to rivershark

Very cool. How long before you noticed improvements in fatigue and depression? I tried already butyrate supplements and didn't notice any difference after a month of taking it.

rivershark profile image
rivershark in reply to miccika1

I noticed improvements in fatigue after 6 months I’d say. The depression was odd as I’d felt better after taking the doxycycline- even though it caused my chronic illness

I’m taking extra dose of butyrate as I didn’t see that much effect with the dose on the label

I still sometimes use the FMT as I order from the clinic and do at home sometimes like after I had a surgery and they used a anti biotic supository which set me right back. They come from different donors each time so you hope to get a good mixture of good bacteria if they take of course

miccika1 profile image
miccika1 in reply to rivershark

For what ailment does your clinic provide fmt? I thought only c.difficile is approved so far,no? Which clinic is that? Im just gonna do it myself using a friend as a donor

overnighthearingloss profile image
overnighthearingloss in reply to rivershark

Cooked potatoes that are then cooled apparently also give rise to resistant starch. It apparently has prebiotic effects on the gut.

The microbiota apparently give rise to certain vitamins as part of the digestion process. I believe certain b vitamins have been noted. Coincidentally I'm sure, low levels of niacin b3 has been linked with mood disorders.

You would possibly believe in a time when so much Information is available to be retrieved that there would be huge advances in medicine.

Could existing big players be blocking advances they can't profit from?

miccika1 profile image
miccika1 in reply to overnighthearingloss

There is a huge amount of research being do e on microbiota. Whoever figures it out will make tons of money so there should be no reason for anyone to be blocking it. Already people are making tons of money w all the supplements that probably dont work, but hopefully we will get better w more research

overnighthearingloss profile image
overnighthearingloss in reply to miccika1

I agree there may be some supplements that dont work. It's a huge field and there are bound to be some players better than others.

But I think many instances people may believe they don't work is due to inappropriate dosing for their current situation.

You know how doctors raise the levels of certain drugs in certain cases of severe illness. That's how it is with certain vitamins if you are deficient. But theres no information to that effect. I am not a doctor. People need to do their own reading to find out these things and to work out how vitamin supplements may work better for them.

GMO foods strip minerals from foods, so unless you are sure you are never eating anything GMO you may be deficient in certain things that you need to stay healthy.

Roarah profile image
Roarah in reply to miccika1

roche hired a leading scientist from Yale recently to work on a vaccine treatment for lupus based on his research on gut bacteria and links to lupus and APS. The drug companies stand to profit from government funded university studies sadly.

miccika1 profile image
miccika1 in reply to Roarah

Correct but we will be profiting even more if they make something successful. Universities do not have large amounts of money to take on the risk od developing new drugs. Without rich pharma we would totally be screwed. Most drugs (more than 98 percent) fail by the time they get to final stages and no university would be able to take on such financial burden...very rarely you can develop drugs cheeply, but for complicated ilnesses not really. Im surprised anyone is taking risk to develop considering the amount of failed drugs for autoimmunity...

overnighthearingloss profile image
overnighthearingloss in reply to miccika1

Yes, but the big players dont want to miss out. And if other potential routes to health might damage their profit model they either try to buyout promising advances to make them go quiet or things never really rise to a position of prominence.

As I had already said I had vaguely heard of LDN ages ago but never followed it up. Here is a link to a video made 10 years ago now. It talks of an effective 'cheap' treatment that would save the NHS oodles of money. But 10 years later it's still in the background.

So do you still have confidence in the way the giants control the market in treatments.

youtu.be/CVpjsDK0LPA

miccika1 profile image
miccika1 in reply to overnighthearingloss

Well 10 years after nobody did a proper research on ldn. I actually got it from my gastroenterologist with no problem and honestly didn't do anything for me. I had to pay a lot of money for the special dose so someone nif definitely profiting from us who are desperate and would try anything. So im thinking things like ldn are just propaganda because every time you hear something cures all be very very suspicious and you could actually conclude it's a scam. Nothing cures all otherwise it would be very much known to all. Also there is placebo effect that happens in 25 percent of people, so any pill you give will help 25 percent of folks, therefore everything be successful in certain percentage...

Also this good doctor doesn't mention any side effects. Ldn produces terrible nightmares. I have been tolerating them in order to see if i will get benefits and it wasn't fun at all. Many people stop taking it after the first night...

rivershark profile image
rivershark in reply to overnighthearingloss

Cold potatoes or cold rice is good yes. I’ve been using tigernut flour which is good too as I can’t tolerate rice or potatoes.

I know in the USA FMT is not authorised by the FDA. But there is so much evidence now about human micro biome and health autoimmune and depression related.

There is a really interesting free coursera course on the human microbiome fascinating

Also the British gut project

britishgut.org/

miccika1 profile image
miccika1 in reply to rivershark

Yup. But a lot of people are doing it at home. It's pretty simple. I JUst didn't hear of anyone doing it for lupus

miccika1 profile image
miccika1

I completed my DIY fecal transplant. No change in anything noted 10 days afterwards. Still have to take miralax to stay regular. Oh well, it was worth a try and a few good laughs...

MatthewBrog profile image
MatthewBrog in reply to miccika1

What you did is quite risky... you're lucky your friend had no dangerous strain he's immune but not you.

miccika1 profile image
miccika1 in reply to MatthewBrog

I know. It's desperation.

whisperit profile image
whisperit

Just reading news that the FDA have banned clinical trials on faecal transplants after a patient died from being transplanted with stools containing druig resistant E coli. Trials might resume once they're satisfied that adequate screening is in place nytimes.com/2019/06/13/heal...

miccika1 profile image
miccika1

Wow. Im wondering how they didn't find the pathogen before the transplant. Poor person...

Roarah profile image
Roarah in reply to miccika1

It may have been an off label transplant. It seems not all stool is tested for drug resistant bacteria prior to use and this is especially true of non FDA approved reasons for transplant. The article does not specify if the transplant was approved and what was being treated. In the states it is only approved for one certain condition so many desperate for improvement of other diseases often seek their own donors and self transplant. It is a dangerous slope sadly.

miccika1 profile image
miccika1

Crazy. Can't imagine someone doing this without testing for pathogens.

MatthewBrog profile image
MatthewBrog in reply to miccika1

Isn't it what you did by doing this "at home" with a friend? using some untested stool.

By the way, have you progressed in your researches? Any success in feeling better? :) I'm currently trying glutamine and butyrate for 3 months. Most studies are 12 weeks-based so... as I read glutamine and butyrate have some success in lowering gut permeability, I'm trying this. Just like you I've been trying so many things for the past years...

miccika1 profile image
miccika1 in reply to MatthewBrog

I did do it. No change 😕. I also tried butyrate, no change. Im pretty sure i tried glutamine too but can't remember if i stick to it long enough. I think i have motility issues due to underlying MCTD so since I can't solve for that i cant make much progress.

MatthewBrog profile image
MatthewBrog in reply to miccika1

Hydroxychloroquine didn’t help?

miccika1 profile image
miccika1 in reply to MatthewBrog

Oh regular therapy definitely helps with many other symptoms. I regularly take hydroxychloroquine, steroids, myfortic, baclofen.