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LUPUS UK
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Gut bacteria in lupus

Folks, did anyone do any gut bacteria tests? There is so much talk about gut microbiome influencing lupus...I did some tests and found out that I have gut microbiota profile similar to lupus people, and not as average healthy people. I'm still figuring out how to deal with it. I also discovered I have SIBO. I'm still trying to figure out how to deal with it. Starting elemental diet, antimicrobials, … Anyone has any experience with fixing the gut dysbiosis and/or SIBO?

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I had a fecal microbial transplant for my chronic fatigue syndrome- but then followed up with paleo diet and anti inflammatory foods. And lots of pro biotics. Fermented foods are good too - but I can’t eat those due to histamine intolerance. I still can’t eat grains without suffering bad joint pain. And I don’t eat hardly any carbs. But my life quality has improved no end. A small price to pay.

The fecal transplant wasn’t cheap but I think if you can eat fermented foods and pro biotics you can help yourself a lot. Wishing you best of luck

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You are so right!! Keep away from antibiotics (when you can ) they are killing the good with the bad.a i diet too .sooo boring .but if it works ???? Brilliantxxx

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Hello miccika1

That's interesting. I wasn't aware of any research that has identified what gut biome is characteristic of lupus. Do you have any links that describe it? Ta x

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They can tell all sorts from the gut microbiome. Potential for many different diseases or conditions years before they occur. They can tell if parkinsons or some cancers are likely. Thus allowing you to be proactive in heading them off. I was watching a US online docuseries called interconnected. But it's finished now.

They are offering fecal transplants in the US but cos you don't hear about anything other than conventional treatments in the uk i dont know if anything is available here.

Conventional medicine is lagging behind badly. But nobody would even be aware without actively trying to seek out info.

And also there is also the snake oil charge to contend with if conventional medicine is shown how slowly it is responding.

This is all I can find online that is left of the series from when it was aired

interconnectedseries.com/st...

But it will give you an idea on topics that were covered.

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They aren’t going to to promote natural healing ???? The drug companies run the n h s and cost our country billions of pounds each year.whats the answer ,we need some of them.they have saved my life more than once.

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We have grown too reliant on them in the way research is funded. But their model to provide symptom relief other than tackling the root cause is going to end up bankrupting the nhs as more people turn to it for help.

I posted in the week about something I was watching online. It's about the use of chemicals and gmos in our food supply. Huge reasons to believe that modern food production methods may be the starting point of gut destruction.

Well the series has just ended but they are doing a replay weekend. In light of this thread it may interest some of you.

gmosrevealed.com

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Just search for peer reviewed articles on lupus and microbiota. A few studies came up with different results thou... Here is one link. ncbi.nlm.nih.gov/pmc/articl...

From all I have read so far the only reseaech rhat really made sense to me is relates to SIBO and there are goos links that katidid posted below. Check them out

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Thanks, yes I am sure this is whre things will go soon, but it is freustrating that it is still at such an early stage. Most of my searches lead to studeis describing good results in C. difficule infections, but the more general autoimmune stuff is a bit sketchy. I'll take a look at the othe links you highliught though x

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Yes therw is a lot of speculation but also some good research. My understanding is that everyone agrees that bacteria in gut and small intestine at least contributes to AI disease. The bad bews is rhat nobody knows yet how to address it. Even if you take antibiotics and kill most od bacteria, they come back pretty fast. The only way to alter microbiota for longer time is diet. Nobody knows which diet would work and even if they do it would be highly individual because we all have different bacteria and therebia no good way to kniw which bacteria is causing trouble. Since i know i have too much akkermansia i avoid foods that it likes to eat in hopes it would starve. I eat foods that encaurage competing bacteria to thrive. So far that's the beat approach i found. No easy way or magical diet, but real hard work to cobtil overgrowth of bacteria

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It is an under-researched area at the moment. We very recently approved a research grant for Professor Claudia Mauri at UCL to do a study, "Investigating gut permeability, bacterial translocation, and B cell activation in Systemic Lupus Erythematosus." We're very interested to see what the results will be.

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Well that's good news at least. There are big things happening worldwide in this field. I think it was a research team at Nantes university hospital in France that has managed to identify potential Parkinson's patients well ahead of time possibly allowing for interventions. There's a company Viome in the US that is making great strides.

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I wish the research well, but I am not holding my breath as to a long term solution or magic drug to end lupus or immune system problems. Most of us suffering from these know roughly why it has happened, too much toxicity from drugs especially antibiotics and/or too much trauma to the body or genetics or a combination of all and more. Without wishing to sound negative as I like to keep positive, I think we, the sufferers can help each other more than any doctors I have seen.

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So, in the past two years there has been a surge in research and data supporting the idea that people with AI disorders have different microbiome makeups than others. It includes Lupus but is not specific to it. They don't know, however if it is a result of the disease or if it existed prior. However, to answer your question, only a qualified gastro should be guiding you on changing the makeup of your microbiome. I know that fecal transplants are popular because of their effectiveness, but they are only done when a particular bacteria or virus has "taken over" the biome and is causing serious health problems. How do I know all this? Because after 10 years of tummy issues and having both Lupus and Spondylitis I was diagnosed with recurrent C. Diff. I've failed Vanco 3 times and now will be going in for a transplant assessment. We have a running theory that had my body not been fighting the C. Diff so hard that my Lupus and SpA would both be milder and more responsive to traditional therapies.

Our T cells (and others) and highly regulated by our microbiome, however if anyone's goal is to alter it, find a professional to work with. To date, there is NO single diet type proven to create the "perfect" biome and many over the counter supplements and pre/probiotics don't work. Also, outside a significant infectious disease takeover, the standard of "normal" microbiome is shifty.

That being said, here are the resources I found re: gut bacteria and Lupus/immunity:

sciencedaily.com/releases/2...

science.sciencemag.org/cont...

omrf.org/2014/01/30/could-b...

clinicaltherapeutics.com/ar...

And here is the presentation from one of the world's leading Lupus experts who gave a talk a few months back. It covers Lupus and the gut:

drive.google.com/file/d/1aB...

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Thank you for useful links. The first one even mentioned specifically bacteria in small intestine. I was diagnosed with SIBO (small intestine bacterial overgrowth). So the results of this research make complete sense. I took two antibiotics to kill the small intestine bacteria but i think it didbt work. My theory is that if the bacteria that is overgrown is not suseptible to the specific antibiotic then it survives. According to my poop sample 30percent of my gut flora is akkermansia muciniphila, while typical range is 1-3 percent. I can't say this particular species is the one that is overgrown in the small intestine thou. Now that antibiotics didnt work im having another approach. I take Low Dose Nalteoxene to move fiod faster from small intestine into the colon so bacteria has less time to eat and eating low fodmap diet to feed them less. This seams to help as i didnt have a flarebof lupus for kore than 2 months - which is highly unusual. Still not completely sure why i feel better but i will continue treating SIBO as much as i can. Im wondering how many lupus patients have SIBO???

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Also please please let me know how the poop transplant goes. I know im not qualified for it but if you get less lupus flares after it, you will know therenis a steong gut connection with you. Maybe w me too considering I have SIBO.

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when i was on the vancomycin to treat the C. Diff my autoimmune symptoms went down and my energy up. I totally agree that getting the balance correct is 100% related to a decrease in symptoms. Also, I had SIBO. Man, it sucked!! Sort of the same story as you. However it was before my AI diagnosis but I'm sure it's related.

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Giid to know. Vancomycin and Neosporin is what I took. Maybe that conteibuted to me feeling better but it took some time. Maybe two months. I didnt see immidiate effect and concluded it didnt work. Especially is indeed akkermansia was the culprit, vancomycin drives akkermansia to grow even more because it doesn't kill it, but kills other bacteria and leaves akkermansia with no competition for food... I'm enthusiastic to deal with SIBO. Im more and more convinced that AI co dition we have is due to fighting with bacterias in small intestine...

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Thanks, I'll look through these with interest. It surely must be crucial in our AI conditions, but what I am still sceptical over is the chicken-and-egg question. I wonder how far these unusual gut flora are a symptom of the underlying dysfunction of our metabolism and/or the meds we take and how far are they actually driving our condition. As with all biological systems, there are lawya feedback loops that the system uses to try to return to a stable state. So I wonder if trying to suppress or replace this microbiome is a losing battle because if they are not causative, they will tend to return if the underlying condition does not get changed. But that's just my rather uniformed argument. I'll have to get reading X

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Valid argument. I wondered the same. I did read one experiment that claims that microbiota is the cause. Most of experiments are w mice, so not golden standard but still it was shown by testing germ free mice, then inteoducing a bacteria that is suspect to cause AI reaction and through different set uos they proved it. If i dig it out i will copy it in this chat

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Coincidentally, my FB feed today contained a new Scientist article reporting a link between lupus in mice and their gut biome - and Lactobacillus in particular. It even suggests that some starchy food (including beans and potatos) may suppress the unwanted growth newscientist.com/article/21...

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Hm thos makes sense. Looking back my feeling better the last few month also coinside with me eating sweet potatoes almost five timea a week for dinner. I started this so i dont eat desert and any time i crave sweets, not for anything else. I blend in a blended sime cooked sweet potatoes w rice or oatmeal and milk and nothing else. I eat it as either dinner or breakfast and it's awesome. Good to know it's maybe cobtributing to me gettig rid of extra bacteria 😁

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I took a CDSA result to my doctors 16 years ago showing so much evidence of what was wrong. The gastro-enterologist promised to do another one for me, but then refused saying they 'don't work this way'. They only do tests from my experience that they can give drugs for, at least in my area hospital. There are no drugs as far as I know that can help with this problem, although there was a programme about stool transplant which I see rivershark has mentioned to insert good gut flora and fauna into the gut.

I can't take probiotics and I am nauseous when I eat yogurts even Greek yogurts which when I went online, it seems many are who are lactose intolerant even though with Greek yogurt much of the lactose is taken up by the bacteria. I, too, can't eat fermented foods or grains for bad joint pain and gut pain/diarrhoea.

Shorthouse is certainly right about antibiotics - they are the main cause of all my gut problems that I experience today.

I quite like my diet especially when I add herbs, etc. I like beans taking only the smaller ones which I cook from scratch and eat with vegetables, herbs, tahini or nuts. I occasionally eat fish and eggs, but struggle with any dairy, milk, yogurts, cheese, sadly. I get symptoms of asthma with these.

The only consolation is we are not alone and we support each other as much as we can.

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I've just started to take non-dairy probiotics. Suitable for vegans. I've had 7 weeks of antibiotics and my gut is struggling. I've been on them for four days and already I have noticed an improvement. They are blueberry flavoured and actually taste good so its an incentive to take it!

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Which ones are they?

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I get mine from Holland and Barrett acidophilus chewable tablets.

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Thanks, I will look in town next time.

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I was advised to get them by my GP as I need so much antibiotic therapy. Sauerkraut is pretty good normally and much cheaper but this stuff has 1 billion healthy bacteria in it. Just dont take it with hot drinks as it kills the good bacteria apparently.

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Thanks, happytulip.

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Sauerkraut is excellent if it is homemade but most shop bought has been pasteurized these days and takes away it's good effects. You can buy unpasteurized but you will need to look harder and it's usually more expensive.

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Thanks for that. I didn't know. Fortunately I have a friend who makes it but I sometimes buy it. I'll know for next time!

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How did you manage to take the test? Did you need someone to prescribe it? Is there a way to donit without a prescription

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I had a therapist or organised it for me and she explained to me the results, so I could tell my doctor, but the doctor didn't understand them - they don't or didn't work like that over here. The therapist prescribed medication for me to help with the results.

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Did the therapy help and what was consisting of?

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Yes, it did, some herbs and supplements, homeopathy and kinesiology. Also a radical change in my diet to healthy food.

What I had believed was healthy, was not for me.

She was able to muscle test me before I learnt to do it myself and she was amazing. She found out why I can't eat so many foods. I am O- blood group, but she asked me to find out my parents' groups because she said I tested like an O sometimes and an A at other times.

When I asked my parents, my father was O+ and my mother A-. She said that was the reason for my strange dietary needs and she taught me to muscle test myself because she was 100 miles away and I couldn't continue to travel so far for testing.

I would phone her or she would send samples and I would test them to see when and how many to take. She said I would need to take care of myself for the rest of my life and I know she is right.

I was also treated by a brilliant bio-com Vega-test therapist who treated me through the machine with herbs and homeopathy because I was too sensitive to take them via the gut.

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unsurprised at your answer. Big pharma seem to fund in some way the majority of research projects. But their bottom line involves them making drugs or therapies they can patent and profit from. So the truth may be that we are all being kept from amazing advances as pharma has not worked out how they may profit. Why move forward with something that could provide cures if it will damage your profit stream.

There needs to be new ways of funding research to prevent this from happening. Pharma is rotten at the top levels.

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There is a lot of research being done in the UK at the moment through institutions like universities and other research centres. Some large lupus research projects are funded by organisations like the National Institute for Health Research and Medical Research Council. Versus Arthritis (previously Arthritis Research UK) contribute a lot to research of lupus and other rheumatic conditions and we contribute as much as we are able, despite being a much smaller organisation. We are lucky to have some incredibly passionate and caring lupus researchers in this country.

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yes but we obviously need more as compared to the money and research that goes to others, like diabetes, or hair growth we are way behind - as evidenced by the number of drugs/therapies lupus gets compared to other issues.

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Hi I am convinced fixing your gut is key to helping I’ve researched so many things we do bone broth there is a vegan version she noticed a difference with IBS have taken away gluten, dairy we all take diatomaceous earth food grade. (Naturalsupplies.co.uk) swear by it.

Where did you do the tests the Dr’s did test for metals but said not enough research on leaky gut causing autoimmune diseases which I don’t believes. So we’re changing her diet slowly tried to vegan but as she is so

Under weight trying to mix her diet up. But she definitely feels a physical difference doing bone broth

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I’m with you on all this .all these antibiotics have ruined our guts .i was on them for yrs .had awful acne as a teenager.i would love to know how many on this site have been the same.stress seems part of it tooxxxx

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Yes, stress is a part of it, but if our gut/body is happy we can manage stress much better.

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Here is the most recent study on gut bacteria influence in lupus. Again mice study thou... sciencedaily.com/releases/2...

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Just following on from previous comment that modern food production methods may be implicated in gut disturbances

Weedkiller found in granola and crackers, internal FDA emails show | US news | The Guardian

theguardian.com/us-news/201...

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