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Date: 23.01.2014
From: Laura

Subject: FMT for RA

Hi,
Has anyone tried FMT(fecal matter transplant) for RA. Dr Borody afer giving it to one of his patient for clostridium, noticed that the patient stopped having pains, I have done a lot of research regarding this but I couldy only find one guy who's had his CRp from 37 down to 10. There is huge research going on at the moment about gut bacteria. Apparently the vagus nerve from the brain down to our stomach connects these two in many many aspects. Apparently the gut from anxious rats was transfered to normal rats, and after the transplant they became anxious too etc...Good Luck!
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Date: 23.01.2014
From: Laura

Subject: FMT for RA

it worked for this guy http://lifewithoutarthritis.wordpress.com/mission-total-arthritis-cure/
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Date: 23.01.2014
From: Laura

Subject: Re: FMT for RA

here is an interesting comment:
Jana Boyle says:
November 13, 2013 at 2:33 pm
Oh, how I wish I could get someoneās attention. I had foot surgery, Jan. and Feb. 2012. Was instructed to go off my RA meds (Methotrexate and Arava)..immune system inhibitors so that my immune system would work itās best to heal my incisions. I was diognosed w/ sever RA. in 2008/9), and consequently put on the meds above..I was to stay off my RA meds for approx 6 weeks after surgery of last foot. At that time I contracted C-Diff. They tried . vancomycin, Zofran, flora-Q flagyl, phenergen..etc, nothing worked. I could feel my RA sneaking up on me againbut was trying to get my body to get over C-Diff. this story short, 7ish months later and over $100,000. in meds and hospI was told by the Hospitalist the next move would be to remove my colon,thanks to my sister discovering fecal transplants on line.The Dr.s at this LARGE hosp. had not heard of it.few days later I was sent to a hospital that had done the transplant 4 times on others. Not only did it immed. get rid of my C-Diff, the pain and swelling from RA.was gone. I have since,done two fecal transplants at home.About every 6 months it seems I can feel my RA rearing up. just did transplant several days ago. I have photos of RA wrist before/after transplant photos I have been off all RA meds since..check out on line RA and Fecal trans. A
mazing .
http://agajournals.wordpress.com/2012/03/26/fecal-transplantation-for-c-difficile-infection/
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Date: 23.01.2014
From: Sean

Subject: Re: FMT for RA

There is lots out there in the WWW for this - ranging from pro-biotics, pre-biotics to coffee enemas

For anyone interested in this area - take a look on YouTube at the human MicroBiome project - which is looking to map the bacteria in the gut against healthy and unhealthy or autoimmune people.

A couple of great videos on TED from Larry Smarr and just google Microbiome YouTube.

http://www.bbc.co.uk/news/health-23621357

http://www.youtube.com/watch?v=Je8YcXQhaT4

There are 10 to the power of 14 bacteria in our gut (as opposed to 10 to the power of 13 cells in our body) - each bacteria completes against the other for space and they adhere to the gut lining. When groups of the same bacteria form colonies they can change their behaviour and "talk" to eachother using Quorum Sensing. Antibiotics and some foods and some diet changes can interupt this activity and change the balanace of bacteria.

My own experience is that Turmeric and Pomegranate Juice do have an affect on my inflammation level. It is the same for fasting - which causes huge changes in bacteria in the gut and colon.

FMT introduces new bacteria at the "business end" of the inflammation and does not have to survive the stomach to try and compete.

Watch the video - it is very inspiring!
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Date: 22.10.2014
From: KIM

Subject: Re: FMT for RA

I have newly diagnosed RA. I am lucky to have a gastroenterologist for a friend. He just did a FMT for me this past Saturday (4 days ago). I will hurry up and wait for now. If anyone would like to follow my progress, please feel free to shoot me an email. Mshe536213@aol.com
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Date: 24.10.2014
From: Sean

Subject: Re: FMT for RA

Hi Kim

I would certainly like to hear about your progress - best of luck on your treatment!

Food and the health of my guts is pivotal in my own arthritis - and I am aware from reading some studies that the balance of gut bacteria is also key.

Please also keep in mind the other end of the possible equation that you may have developed some food sensitivities as a result of gut bacteria imbalance. The immune response to these may not disperse with FMT.

You do not need increased intestinal permeability whilst you are healing your gastro intestinal tract -

http://www.ncbi.nlm.nih.gov/pubmed/16635908

If you do eventually feel better then challenge your system with different foods to sew what response you get.
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Date: 31.10.2014
From: Kim

Subject: Re: FMT for RA

Three weeks off of RA meds related to an allergic reaction. Two weeks post FMT. No pain or swelling has returned yet. So far, so good.

As for food, I have been gluten free, veggie, low diary and organic when possible, for years.
I have started sneaking gluten back in and feel fine.
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Date: 31.10.2014
From: Sean

Subject: Re: FMT for RA

Hi Kim

Thats great to hear.

Not sure if you read this I posted earlier this year. It ties in with FMT and there being a "Microbiome" in place that your body can live in peace with. If you get the time I really recommend as it explains a theory of how autoimmunity can be triggered in the first place.

https://www.youtube.com/watch?v=VvfTV57iPUY
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Date: 25.12.2014
From: Kim

Subject: Re: FMT for RA

Hi, quick update
Over two months post FMT, still no pain or swelling. NO meds, no mobic, no Motrin.
Another little perk, 10lb weight loss, no food sensitivities.
Happy holidays, kim
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Date: 04.02.2015
From: Kim

Subject: Re: FMT for RA

Hi, Kim again with another update. I'm not sure if anyone is following this but I feel it is so important to keep posting.
I'm now almost 4 months post FMT and still have no RA symptoms.
My hands and knees do hurt, but they don't hurt like the RA pain. I think the pain is from the damage to the joints caused previously by RA.
I am still working 40-50 hours a week on my feet as a nurse and the exhaustion is completely gone.
No RA meds, no Motrin.
Still doing great!!!
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Date: 05.02.2015
From: Sean

Subject: Re: FMT for RA

Hi Kim

I follow your posts with interest - I grew up with gut issues and believe that my AS hitting me at about age 18 was related to imbalance in my gut.

Although I am at least 75% better most of the time - I still have brief flares and tummy still not always perfect :( with bad reactions to milk and some foods - more recently beef (perhaps grain fed!?)

I found myself lucky to have a long remission a number of years ago - and my AS came back about 2 weeks following food poisoning / tummy bug

There are a couple of medical alternative that I may look at and FMT would be one - plus I would looking at get a consultation on Immunotherapy EPD - which is Enzyme Potentiated Desensitization. Maybe with FMT I would not need it?

Although I guess that with FMT your new gut bacteria will change and adapt to the environment and diet that you partake in?

Logically I would hope that FMT is a better way to alter the interplay between gut and immune system than than say Antibiotic Therapy.. as AP Therapy would get rid of the baddies, but FMT adds more goodies to nullify the baddies (which are not always baddies).

I read an interesting article from a top scientist last year on this and he used an analogy of our guts being a zoo - and said if you have 10 giraffes, 2 crocodiles and no hippos - you will not get hippos by changing the diet of the giraffes or putting in hippo food. FMT does that it populates your whole zoo with new animals of all types.

Keep posting - your story needs to be out there so that Rheumi's can "believe" the gut / bacteria / diet link with Arthritis and other Autoimmune diseases!

BTW - out of interest which country are you in... Motril is a name for Ibruprofen?
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Date: 06.02.2015
From: Julie

Subject: Re: FMT for RA

please keep posting updates Kim I am following.
Julie
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Date: 07.02.2015
From: S.Keptick

Subject: Re: FMT for RA

Kim can you tell us more about how you obtained the transplants and how they were administered please.
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Date: 08.02.2015
From: Kim

Subject: Re: FMT for RA

Hi everyone,
I'm happy to see that people are following!!
I'll try to answer all the questions.
I'm in the US Virgin Islands. Yes Motrin is Ibuprofen.
I have a friend that is a gastroenterologist (in the states). We tested my husband and used him as a donor. I did a complete bowel prep and fasted for two days before the FMT. The donor stool was sprayed in the colon all the way up to the small bowel with the colonoscopy. I took Imodium for two days to keep the new environment in for as long as possible.
Yes , it is the zoo!!
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Date: 08.02.2015
From: Sean

Subject: Re: FMT for RA

Hi Kim - thanks for being so frank - I was never sceptical, I wish people would use real names when asking questions, it is sort of rude.

I read up on this a bit more this morning and all of the studies seem to tie up well. I had already remembered Dr Alesso Fasano (of celiac study fame) also a Gastroenterologist - says in his YouTube lectures that they can make mice fat, thin or mad (he said "nuts" ) by changing their microbiome.

Then when searching this morning I found a very recent Oxford Journal paper (November 2014) on FMT where a mother took a transfer from her daughter and quickly gained weight, 34 lbs - it says about FMT

"With the occurrence of weight gain after FMT in this case, it is now our policy to use nonobese donors for FMT. The untoward consequences of using nonideal FMT donors are important, because patients may prefer to use a family member rather than an unrelated or unknown stool donor due to the perception that these sources are safer."

So it appears we should choose a donor carefully :) - the YouTube video from Larry Smarr I posted further up in this thread is highly relevant as they are now starting to understand what balance gut bacteria zoo make for the best health.

It also annoys me that the emphasis is always on genes rather than the affect of our gut bacteria on our genes - the bbc programme a few weeks ago was telling lots of people that they carried an obesity gene that made them want to keep eating - my hypothesis is the gut bacteria they have helps to express the gene?

Alesso Fasano uses an analogy that the genes are they keys on a piano and that the gut bacteria press the keys to play a different tune - health or disease. Flare / remission!!!!
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Date: 26.03.2015
From: Jane

Subject: Re: FMT for RA

Kim - please keep posting - very interested.
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Date: 06.04.2015
From: Kim

Subject: Re: FMT for RA

Hi,
It's Kim. Well, I had some return of symptoms, they were mild but were here none the less. I had some heavy stress and lots of unwanted overtime at work. I think the combination of the two had me run down.
I was planning on a home FMT to get back on track so I took two bottles of laxatives to clean me out but was unable to do the FMT because of timing issues, but the symptoms started to subside on their own. Either because of rest and decreased stress or because of the clean out.
I've done another "clean out" since and seem to be maintaining just fine. Still some pain in my hands, but very tolerable.
Maybe something builds up in the gut, maybe it takes a long time to heal a leaky gut. I don't know, but this seems to be working, not quite a cure but 98% improvement in life quality.
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Date: 09.04.2015
From: Sean

Subject: Re: FMT for RA

Kim - great to hear that you are able to put things back on track.

Do you follow any diet to protect further flares - by promoting eating probiotic foods? I remember that you previously posted that you were eating grains - whereas you had previously thought you could not eat them.

You are probably aware of the recent research that a carbohydrate based diet feeds gut bacteria that can promote inflammation - one gut bug in particular has been mentioned called "Prevotella Copri" - an increase in which is heavily linked to RA.

I have just been reading that this bacteria feeds on carbs - especially grains - but other carbohydrates such as citrus pectin can decrease this bacteria.

I don't see Prevotella as pathogenic or as the cause of RA - it is more that it part of the gut bacteria that help regulate immune response.

This article here says -

"Multiple studies have shown that commensal gut microbiota is of great influence on immune homeostasis and can trigger the development of autoimmune diseases by favoring induction of Th17 cells over Tregs."

http://www.hindawi.com/journals/jir/2015/527696/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816614/

My question would be can a very low carb diet over time reduce flares - for RA by ensuring that only certain bugs live in the gut. I know for me with AS it can work but for RA - who knows?

Given that the same diets for IBS, diabetes and other disease look at carbohydrate restriction - I guess that many people could benefit other conditions as well as RA?
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Date: 11.04.2015
From: Kim

Subject: Re: FMT for RA

Hi Sean,
I do think diet plays a huge role in RA symptoms-inflammation. I do notice that foods like tomatoes and coconut oil make me feel "less thick", if anyone can understand what means. I think fiber is really important too.
I have read almost every article out there on p. copri and it all makes sense. Before my FMT, gluten would make me so tired that I would yawn all day, my eyes would water and my mind was cloudy. Since the FMT, gluten has no effect on me. I don't notice any increase in symptoms if I eat pasta or bread. The FMT may have suppressed the over growth of P Copri, who knows. I was taking probiotics for a while, I might be crazy, but I don't think they were making me feel better. I actually think they made me feel worse. I wondered if they upset the balance. I do drink the occasional Kombucha and eat organic sauer kraut. I try to get yogurt in me daily. I think the fermented foods might have a very diverse population of good flora where as a supplement may be limited.
Since all of my symptoms are so mild now, it's hard to say what really helps or hinders.
Six months ago I couldn't walk with out assistance, I really thought I would never be able to go on my sail boat again, But i just returned from a 10 sailing trip. I was climbing the ladder, winching and pulling lines. My life is back.
I wonder how all of us that are affected by RA, could get a real clinical trial started.
My CCP was 140 before the FMT. I'm going to get it checked again to see if it has changed. It will be a while before I can get it drawn, but I'll post the results.
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Date: 11.04.2015
From: Ella

Subject: Re: FMT for RA

There is an article under the Health section on the Mail Online about a man who was cured from Clostridium difficile with a faecal transplant from his daughter and it was done on the NHS.
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Date: 11.04.2015
From: Karen

Subject: Re: FMT for RA

Wow just read the article , amazing results ! Just goes to show that gut health is the key to health and well being .
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Date: 11.04.2015
From: Ella

Subject: Re: FMT for RA

It all sounds really revolting having someone elses poo transplanted into ones bowel, but more and more stories about this therapy are showing brilliant results. I read last week that household bleach could be a contributory factor in developing many diseases. Homes are becoming too sterile.
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Date: 11.04.2015
From: Sean

Subject: Re: FMT for RA

Hi Kim

Your story is so inspiring, it's great to hear you are able to do so much more - my concern personally would be the presence of reactive b-cells in the blood stream are likely to still be around waiting for whatever antigen was present before and was causing your RA.

To get slightly technical -

The gut bacteria assist with selection of T-Cell responses when a Dendretic cell detects an antigen (let's say E-Coli) - whilst you have a nice selection of gut bugs that is fine the T-Cell is passed messages to instruct the immune system to do a laser guided attack on the antigen - instead of a broad spectrum attack on the antigen and anything with similar protein sequences.

The next issue is to ensure that the blood stream part of your immune system does not get presented with too many of the antigens - hence protect the gut and try and limit gut leakiness by avoiding grains again.

If this stuff stays in the gut then happy days!

I think that a diet of often lower carbs or temporary fasting keeps some bad bug levels low - but ultimately grain free (apart from rice) ensures that even if we occasionally get bloated or feed the bad bugs from too much rice / potatoes - Easter eggs :) - we can limit the amount of antigen that is presented to the immune system. I've had a flare for 2 weeks due to gorging on Cadburys Mini Eggs.

I guess I am being optimistic - but I think this will be the key to helping many diseases including Alzheimer's - I even saw P. Copri being discussed on an ALS website earlier as TH17 T-Cell and lack of regulatory t-cells are the same in this disease as RA.

Different ingredients (antigen and genes) but the same recipe / mechanism!

Cheers
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Date: 12.04.2015
From: Kim

Subject: Re: FMT for RA

Ugh, Sean, that's a little above my pay grade. ;)
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Date: 23.07.2015
From: Sally

Subject: Re: FMT for RA

Hi Kim: Can you tell me more about the screening process your gastroenterologist used with your husband. I am wondering if it is safe to use a family member as donor or more advisable to go overseas and use a clinic with a donor bank.
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Date: 26.08.2015
From: cachophrastus

Subject: poo transplants

Oh for God's sake. Poo transplants! Whatever next?

There is nothing new under the sun. Hitler had terrible digestive problems because he ate too many beans. He found a quack doctor who prescribed the latest thing: tablets made from the poo of healthy young soldiers. This quack went on to make Hitler a human pin cushion. By the end of the war he was a physical wreck. The quack gave him morphine injections to sleep and in the mornings Hitler took pure glucose to try to wake himself up. On D day, the allies could have been repulsed if the Germans had used the tanks they had in reserve behind their lines. But this would have required an order from Hitler and no-one dared wake Hitler up. So you could say that thanks to poo tablets the Germans lost the war.

Leave the poo alone for God's sake. All you need for healthy bacteria in the gut is to make some home made sauerkraut. Eat one tablespoonful with every meal. (You don't need more.) With 4 white cabages in a few minutes with a food blender you can make a big kelner jar full which will last you at least 6 weeks. Don't use the shop bought stuff it is useless. It's pasteurised which defeats the whole object. Don't buy so called "raw sauerkraut" on line either. It's not raw, it's been pasteurised as well - an overpriced con. Why does it work? For two main reasons with a third useful health benefit.

1. Cabbage has miraculous healing properties for the human digestive system. Cabbage juice for ulcers will beat any drug.
2. Trillions and trillions of beneficial bacteria which will make life impossible for bad bacteria, fungi etc.
3. Fermenting the cabbage increases the bio-availability of the plentiful vitamin c in cabbage.

All you need to overcome arthritis is a bit of common sense (It's not all that common ;-) and some self motivation. Start by reading this book:

http://www.amazon.co.uk/prevent-reverse-diseases-Seignalets-miracle/dp/150318496X/ref=sr_1_1?s=books&ie=UTF8&qid=1440567495&sr=1-1&keywords=seignalet

Leave the poo transplants alone!
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Date: 27.08.2015
From: Sean

Subject: Re: FMT for RA

I agree with you on the cabbage - my German neighbour makes his own and ferments in his airing cupboard! Delicious.

It's just not that straight forward.

There are bacteria in the gut that cannot be replenished from diet or pro or pre biotics!

There are even some that cannot even be held or synthesised in a laboratory.

The flow of events are as follows -

Mother takes antibiotics => has a baby and baby inherits depleted gut flora => baby gets ear infection => child takes antibiotics => has a baby later in life...etc...etc

Chemicals in the environment - also kill bugs in the gut. Food sprayed with organophosphates - antibiotics in animal feed. Cadmium as discussed on this forum.

Casearian births also cause a different inheritance of gut bacteria.

I have likened the gut to a zoo before - and if your zoo doesn't contain any hippos - then you cannot get hippos by feeding the giraffes more!

And you cannot get hippos by putting hippo food down - because they don't appear from thin air.

Without being too dramatic - there is a sort of extinction event going on in terms of gut bacteria because of the above!

Until we understand each unique animal in the microbiome zoo better it is too early to say if FMT is a dead end or not - but personally I think it is not a dead end.
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Date: 27.08.2015
From: Hayley

Subject: Re: FMT for RA

FMT clinic in Hitchin, Hertfordshire
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Date: 27.08.2015
From: lucy

Subject: Re: FMT for RA

Good to have you back on, Sean. I missed reading your posts.
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Date: 27.08.2015
From: Sean

Subject: Re: FMT for RA

Cheers Lucy :) Work has been busy - and it's been so quiet on here!

My wife was in the doctors today and a poster mentioned that 50% of children now have food allergies - which is truly incredible.

If you consider the way the immune system works - it "presents" proteins for recognition as the immune system has to decide if that protein is friend or foe.

The way it is "presented" is really key - we want the body to tolerate each new presented protein. This excellent short paper explains it quite clearly -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448089/

Also Danish scientists were able to determine from the Danish register of births that children born by C-section have been more frequently hospitalised than those born vaginally due to asthma (20%), juvenile rheumatoid arthritis (40% more!), inflammatory bowel disorder, immune system defects, leukaemia, and other tissue disorders during their lives.

BTW - I think you are 4 x more likely to become celiac is you are born by c. section - so its not just genetics, it's about inheriting a protective gut microbiome (if your mother had one to inherit in the first place)

I'm still med free - I had flare in my rib-cage and back after eating out in France a few weeks back (a cream sauce had wheat in - I didnt ask because I was lazy). But I also can flare up for a week if I overdo carbs and sweets / chocolate - which ties up with the NCBI paper above. I am feeding the wrong bugs too much!

I know I was giving Castrophastus a bit of a hard time the correlation with Hitler eating poo is ridiculous though - but he really is sort of correct and I can see that eating the Seignalet way would do a lot of good, and adding good new diverse bacteria through proper sauerkraut / certain NO SUGAR yoghurt like sheeps / goats would also be good.

But it does you no good if you then feed the new bugs too many carbs / sugar - as the ones you want to live will die and the one that were causing the problems will survive and thrive.

My wife is about to restart an attempt at low carb - for her high blood pressure but its currently controlled at 127 at the moment. But he main reason are lipoma under the skin... - she need to get off the meds! I have also suggested a high fat yoghurt, bone broth - instead of low fat to give more energy. I have high hopes..

Take Care
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Date: 27.08.2015
From: Sean

Subject: Re: FMT for RA

BTW Cachoph - I did a beef joint the Seignalet way at 115 degrees for 6 hours earlier this year - it was amazing!
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Date: 28.08.2015
From: cachophrastus

Subject: Re: FMT for RA

Hi Sean,

That's not quite Seignalet I'm afraid. It's 5 degrees too much and he said that cooking must be as brief as possible.
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Date: 28.08.2015
From: cachophrastus

Subject: To Sean

Sean,

You spend too much time on pubmed. I was in the supermarket today and it really is no suprise to me that we are a nation of invalids. The people in front of me and the people behind had a full shopping trolley full of junk. The common denominator was that all the foods were made from refined white flour and sugar with various flavourings. I looked really hard to see if I could see just one, just one food that would at least provide some vitamins. The only thing I could see was a plastic carton of milk and another plastic carton of orange squash. I can only hope that there was at least just a little bit of real orange in the squash but somehow I doubt it.

How shameful to live in a country where our national services cannot provide some nutritional information and instruction on basic cooking.

Even in a scandal riven country like France where the finance minister was found to have a secret account in Switzerland in order to evade tax and had to resign, they managed to put a tax on sodas.

How shameful that we think it's OK to let billionaires brainwash our kids into thinking all the cool kids drink Coke and "energy" drinks.
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Date: 28.08.2015
From: Sean

Subject: Re: FMT for RA

Hi Catho

I agree crap food is a massive factor - and supermarkets are full of crap. Government advice - and the food pyramid is shameful - I like the advice I once heard - if it's got a list of ingredients then don't buy it. Btw - I cooked my beef (which was a huge rib roast) on 60c for the first 5 hours then I was worried and upped the temp to 115 just in case. Perhaps I will hold my nerve next time. But it was still very rare.

Seignalet is on the right track - I'm not putting all my eggs in one basket. It is certainly multifactorial - and pubmed provides some of these insights.

We cook from scratch 95% of the time in our house.

A great talk I found (not on pubmed) from a doctor - who reversed his diabetes Peter Attia

http://www.youtube.com/watch?v=NqwvcrA7oe8

This is a shorter talk on diabetes / obesity

http://www.youtube.com/watch?v=U3oI104STzs
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Date: 28.08.2015
From: Sean

Subject: Re: FMT for RA

Hi Chris

I was just reading your post in another website here -

http://paleozonenutrition.com/2011/04/01/dr-jean-seignalet-ancestral-diet-and-auto-immune-disease-trials/

I am going to buy the book 😄

All very interesting and I agree with lots of this in the link above, but I have concerns too -

- Raw eggs (might have been ok before modern farming but not today)

- Soya - no no - nothing will convince me it's safe apart from highly fermented

- How did ancestral man manage to cook at low temperatures? I think we are saying here that they ate raw. Which ties in with the Giles Coren where he found an extreme Paleo guy in the US that reared his own livestock, slaughtered it and ate all of it raw

Science moves on (Allesio Fasano and gluten for example) and we are starting to understand why autoimmune diseases happen - personally I think some of the stuff that Seignalet does is an adjunct to a core diet that is lower carbs, grain and dairy free.

The low temperature cooking is of real interest - and from reading pubmed I have my own theories as to why it helps. The scientific term is "post translation modification" - as protein get modified by heating they become damaged and will be more likely to stress the immune system - the modified amino acid chains causes creation of antibodies that are harder for the immune system to differentiate from self. Peridontal disease / gingivitis causes the same protein modification.


Cheers, Sean
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Date: 18.10.2015
From: Miranda

Subject: Re: FMT for RA

Hi , I AM following ; just found this forum. My daughter aged 9 has JIA... All her life a super healthy vegetarian, now vegan and avoiding intolerances found on Igg testing (York labs) and taking daily flax oil, vit D, multis, pre and probiotics - but still flares. Have tracked this back to first week of life IV antibiotics.
Has anyone heard of/got experience with FMT via capsule form? Be hard to do FMT on an unwilling child... And prohibitively expensive
Thank you
love from Miranda
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Date: 19.10.2015
From: Sean

Subject: Re: FMT for RA

Hi Miranda - hope you dont mind me asking what food intolerances does your daughter have?

I'm aware from scientific studies that some who follow a vegan allied to a gluten free diet can help - here is the study from 2001 -

http://rheumatology.oxfordjournals.org/content/40/10/1175.full

...notably they did not compare their diet to a gluten free diet that included meat.

That said - some meats are common food allergens that are known to cause arthritis reaction in a small percentage of people - but corn, wheat and milk are the most common - I think beef was the most common meat protein to cause a reaction.

Interesting in what you said about antibiotics at a very young age - as there is also lots of evidence now that being born by caesarian limits the babys intake of bacteria (bacteriodes type) during birth - which also leads to massive increase in disease likelyhood later in childhood or later in life -

http://improvingbirth.org/2015/01/huge-study-cesarean-birth-is-major-risk-factor-for-chronic-disorders-in-children/

Regarding capsules for FMT I found this recent article - 2014

http://www.massgeneral.org/about/pressrelease.aspx?id=1748

I have also ready however that the upper gastrointestinal tract should be sterile and there are risk of infection if the capsule does not survive the transit.

I would recommend looking online at SCD diet - GAPS diet as these are also associated with repairing the microbiome is a natural way.

Also to be frank regarding my own AS (ankylosing spondylitis) it is pretty much agreed that this arthritis is caused by a cross reaction to a gut bacteria called KLEBSIELLA that feeds on starch. Which would always rule out a vegan or vegetarian diet for me.

What I am saying is that the intolerance (immune reaction) is not always to a food protein - but is to a bacterial protein and that a negative test for a food does not mean that a food could be feeding certain bacteria to which we might be reacting to.

Then there is the non-allergic reactions to food that are now being realised (will not show on IGG).

Researchers are 100% sure that when there is a depleted gut bacteria that our bodies have a response to gluten (gliadin) that causes the guts to become porous and let in bacterial fragments.

Here is the study that says irrespective of having Celiac - we all respond to gluten.

http://www.ncbi.nlm.nih.gov/pubmed/16635908

"CONCLUSIONS:

Based on our results, we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules."

Take care and hope you get some relief for your daughter :)
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Date: 19.10.2015
From: Sean

Subject: Re: FMT for RA

Miranda - sorry to bleat on about gluten but there is a lot of research that is not shared by our medical "experts" -

This study here should that Juvenile Arthritis 9and adult arthritis) had massive increase in anti-gliadin antibodies and that remmision/ non flare times correlated with reduction of anti-gliadin antibodies.

http://www.ncbi.nlm.nih.gov/pubmed/1764847

The other smoking gun here is that they admit that they were not celiac - but also that the gut permeability was secondary to Non Steroid Anti Inflammatory. My own arthritis has markedly reduced flares by NEVER taking any NSAIDs - not even for a headache / migraine.

"non-specific immune stimulation rather than to an NSAID-induced increase in intestinal permeability"
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Date: 08.12.2015
From: Kim

Subject: Re: FMT for RA

Hello everyone, sorry I've been away so long.
I moved back to the states from the Virgin Islands and established a rheumatologist here.
I just completed a new round of labs. CRP normal, SED rate normal, RF normal, CCP 199, X-rays of hands, hips and shoulders no erosions and no detection of RA on physical exam.
The DR. said "I'm sure someone thought you had RA in the past, but you don't have it now. You are in remission"
This news came almost one year exactly after my FMT.
She said that with the CCP at 199, there's a chance of it returning, so I will see her every 6 months just to monitor blood work.
My fatigue is gone, my knees have returned to normal, my hands still hurt if I do a lot of physical work like raking. For the most part, I feel RA free
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Date: 05.01.2016
From: Jj

Subject: Re: FMT for RA

This is amazing !
Did you organise your own donor ?
Any other changes you noticed ?
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Date: 30.01.2016
From: Joe

Subject: Re: FMT for RA

Glen Taylor at the Taymount Clinic, Hartfordshire, UK is working on an encapsulated microbiome pill. OpenBiome is making encapsulated pills, now being tested in a clinical trial for IBS, in New York.
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Date: 30.01.2016
From: Joe

Subject: Re: FMT for RA

Hi Kim,
It's great to hear that you have reversed most of your RA symptoms via an FMT. I've been studying FMTs, and the human microbiome for 2 1/2 years now. I reversed by IBS-D with a home microbiome transplant. It is do-able, they can work, but you need to get the procedure right. C. Diff. is relatively easy to reverse, but other conditions require a better procedure. Screening and testing your donor is very important. If you want the procedure I followed you can email me at jmot53@yahoo.com

Kim, I would suggest you eat foods that support your good, helpful bacteria. Eat a large variety of fresh fruits and fresh vegetables, and include unsalted and unroasted nuts and seeds, and raw honey. These foods actually turn out to have good, helpful microbes on them, the ones we need. Fresh is best. Our good microbes thrive on vegetables. Avoid red meat, as it usually has low level antibiotics in it, a bad thing for our good microbes. Avoid all sugars, and processed foods too. Eat healthy, eat fresh. Avoid antibiotics when you can, because they kill not only bad bacteria, but our good, helpful bacteria as well. Already, the average American has lost 40 % of the the diversity of their microbiome. Greater diverstiy of this ecosystem is associated with better health. In fact a long list of diseases have been linked to a damaged/disturbed microbiome. It is amazing how important this ecosystem of bacteria (our human microbiome), is to our health.

It's really great to hear that you have found the answer, and have restored your microbiome via an FMT.
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Date: 05.05.2016
From: Karen

Subject: Re: FMT for RA

Hi Kim. I've just found this forum. Hoping you still read it. I'm at day 4 of 4 day fmt course to hopefully treat my RA. I decided it was for me after extensive reading on the net. Currently I have flu like symptoms sneeze a lot, tired and emotional. Did you go through feeling worse before feeling better? I see by 2 weeks after your RA symptoms had dramatically improved. Thanks
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Date: 10.05.2016
From: Kim

Subject: Re: FMT for RA

Hi Karen, it's Kim.
Good for you getting the FMT. NO, I didn't have any strange symptoms after the FMT. Hopefully it's just a coincidence.
I am happy to report that am still doing great! My hands have even stopped hurting.
I did have some achy days a few months ago, but all is well now.
I really hope you do as well as I have!! Keep us posted
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Date: 11.05.2016
From: Anne B

Subject: Re: FMT for RA

I'm a bit ignorant in all this. Could someone explain how you go about getting this and how is it performed? I would appreciate some more details as to what it entails. Thanks. Anne.
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Date: 11.05.2016
From: Anne

Subject: Re: FMT for RA

Just had a read online about it and see that it's administered through an infusion from either the mouth or anus. Not sure what I think of it, think I'd like more evidence before I could try it but then again some infusions have mouse protein in them so not too appealing either. Good luck to everyone that's having it.
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Date: 14.05.2016
From: Catarina Amorim

Subject: Re: FMT for RA

Hi Laura the problem with fecal transplant is that you are transplanting a huge amount of microbes from virus to bacteria to fungus (all this is what is called the micro biome) and 1- you have no idea what each of them do and 2- depending of the donor you are receiving totally different populations .

Until scientists isolate the different organisms to discover what each of them do (and so far they have been almost impossible to grow out of the gut) this kind of transplants only make sense in infections by Clostridium dificilis which are not responding to antibiotics and can be lethal. To do a fecal transplant in a disease like RA, for now , with the knowledge we have, is a lottery that you do not want to play. But research on the micro biome is moving incredibly fast so give it time
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Date: 16.05.2016
From: Sean

Subject: Re: FMT for RA

Hi Caterina,

I've read lots of research on Microbiome and its role in disease.

You are right to an extent - but there is an elephant in the room as they do not actually know how many drugs work either.

Why just c-dif? It's been very successful in autoimmune crohns disease too.

Why not test the donor before the transplant - research knows that a good healthy diverse microbiome is key - so as long as the donor has dozens more gut bacteria species than the recipient.

I would say depending on the severity of disease and diseases in question then it really must be a damned sight safer than many drugs (which only suppress and do not get the to root-cause). If the root-cause is a deficiency of gut bacteria species.

Here is a study on future direction of FMT -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3742951/

"Regarding other potential treatable conditions, evidence for FMT at present is lacking. Isolated case reports of FMT response include multiple sclerosis [50], Parkinsonās disease [51], chronic fatigue syndrome [52], and idiopathic thrombocytopenic purpura [53]. Apart from these published reports, the lead author has also observed convincing improvement after FMT in several other conditions, including rheumatoid arthritis, sacroileitis, halitosis, acne, insomnia, and major depression. Autism spectrum disorder is another condition in which the GI microbiota is implicated [54], where FMT may have a role."


I have a cynical view on progress - Randomised Controlled Studies simply wont be funded as there will be no profit if were proved to be successful.

It would wipe billions from Pharma profits if we found that some conditions responded to FMT.

Lets hope I am wrong and that they genuinely want to put patients care before profit.

I am not talking about each individual doctor / consultant that shows care to his patients and using the tools that he is given to do his work - I mean the industry / corporate level of medicine.
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Date: 23.06.2016
From: Susan Laswell

Subject: Re: FMT for RA

Anyone have any experience with the Traymount clinic in England? I'm thinking of going there. I have RA, Hashimoto's, and Celiac Disease.
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Date: 24.06.2016
From: Sean

Subject: Re: FMT for RA

Hi Susan

I follow them on Twitter - my view is that they seemed to talk some sense.

BTW - It's TAYMOUNT

There website is here -

http://taymount.com/about-us

Bottom line is that AI disease is due to invalid antigen presentation to the immune system.

Three things involved in antigen presentation that 'inform' the T-CELL and B-Cell response to foreign proteins -

- Gut bacteria
- Mineral status (zinc, iron, copper, magnesium, manganese)
- Hormones (including raw material (DHA), > Estrogen, < Progesterone, insulin)
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Date: 04.12.2016
From: Amanda

Subject: Re: FMT for RA

Hi there. I found your post while investigating FMT for myself and my Dad for Ankylosing Spondylitis and RA. Since its been 2 years since your post I'm interested in hearing the outcome of you're willing to update? Hoping you're well!
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Date: 05.12.2016
From: Sean

Subject: Re: FMT for RA

Hi Amanda,

It is unusual to have both AS and RA - what are his symptoms?

I am well read on FMT - but deal with my Ankylosing Spondylitis through diet changes (including probiotics for my gut) and exercise.

My outcome has been hugely positive and I am very rarely in pain.

I take no drugs for my AS - and avoid NSAID always.

Happy to share more knowledge and info - contact me on Twitter @Treat_Me_Gently
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Date: 05.02.2017
From: Jeff Craigen

Subject: Re: FMT for RA

Where did you get this done. Please email me :)
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Date: 19.03.2017
From: Ana

Subject: Re: FMT for RA

Hi Kim, I read your post about being diagnosed with RA and having a friend that was going to do some gut testing how's it going?
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Date: 26.03.2017
From: williamssolis

Subject: Re: FMT for RA

(MUST READ: RHEUMATOID ARTHRITIS CURE)
In 2014 I started having pain in my left foot. The doctor tested me for gout and it was negative. A couple of months later I started having pain and stiffness in my left hand that was very severe at night. The doctor did blood tests for rheumatoid arthritis (RA) and I tested positive for anti-CCP (134). Then the pain started spreading to other joints. I was so tired some days that I didn't feel like driving myself home from work. My eyes were dry and irritated and I had a dry cough. All medications given by my rheumatologist were really not helping. Finally i started on Newlife Rheumatoid arthritis herbal formula in 2016, just 3 weeks into the RA herbal formula usage some symptoms had seized. When i finally completed the herbs usage all symptoms including aching joints, stiffness, pain and fatigue dissapeared. (Visit www. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com). I recommend this herbal treatment for all RA sufferers, its a final breakthrough for all suffering from Rheumatoid Arthritis.
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Date: 06.04.2017
From: Patricia

Subject: Re: FMT for RA

I began experiencing sharp pain and stiffness in my right hand. This pain always occurs in the morning and may not go away. I thought that I hurt my hand somehow but I could not remember what I did. I also began to experience extreme fatigue and malaise. About 4 months later, I went to the doctor and after many repeat blood tests to rule out Lyme disease and Lupus, I was diagnosed with rheumatoid arthritis (RA). I was adjusting to the medications Plaquenil and methotrexate, but they make me feel sick also. I had a ringing in my ears and loss of appetite. I sometimes had problems writing, dressing, or writing with my right hand.When the medication no longer helps, i was introduced to Health herbal clinic in Johannesburg who have successful herbal treatment to rheumatoid arthritis diseases. I spoke to few people who used the treatment here in United States and they all gave a positive response, so i immediately purchased the rheumatoid arthritis herbal remedy and commenced usage, i used the herbal supplement for only 5 weeks, all symptoms gradually faded away, herbs are truly gift from God. contact this herbal clinic via their email healthherbalclinic @ gmail. com or visit www. healthherbalclinic. weebly. com
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Date: 21.12.2017
From: Robyn

Subject: Re: FMT for RA

I have been following all the posts about FMT for RA with great interest and wonder if anyone has had successful FMT in Australia. I would also like to hear from anyone who have successfully used the herbal method as mentioned in the last 2 posts. I have had aggressive RA for 5 years and tried all the biological DMARDS with bad side effects and down to the lesser evil of 10mg methotrexate weekly and folic acid. I have followed the microbiome diet which I am sure helps but found I could not manage long term on such a restrictive diet. I am taking cucumin, ginger and apple cider vinegar and kiffir but no obvious benefits there. So looking for an alternative that will give me back my quality of life.
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Date: 23.12.2017
From: Colin W

Subject: Re: FMT for RA

Robyn , why not just look at which foods that help replenish Gut Bacteria

as for RA , there is aggressive RA & aggressive RA & dont know which you are , dont know if you are sero positive or negitive but if you are one of the unlucky people with severe RA these fad diets etc wont control your RA

as for Mtx , folic acid 5mg six days a week helps , I was on it for 18 years , now I am on Leflunomide & Tofacitinib which is a tablet biologic & getting on very well with these

if your RA is aggrestive you need to look after your joints & get your RA under control & monitor with blood test & hope they do find a good treatment at some point
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