Foecal microbiome Transplant

[Goldfishbowl]

Hi all, I just thought I'd let you know that I decided to have FMT treatment. I went to the Dove Clinic in Twyford Hampshire in November last year. My M E was so severe that I relapsed after I got home from the Dr. He said my problem was my gut and as I was so intolerant to any medication it was something that I should try and do. Unfortunately I was too ill to start the treatment last year and it has taken me nearly 6 months to recover. I have very little energy now but thought I should try the FMT.
I had to have a colonic to begin with which was okay and then had my first treatment. This was 2 weeks ago and so now I go to Twyford until I've had 10 implants. I have a fungal infection as well that has become resistant to antifungals so this is another reason for doing this treatment. I am on a very strict diet I am not allowed caffeine, have to eat plenty of veg and very little fruit. Only wholemeal rice/pasta etc. Lots of oily fish and very little meat and no sugar. But lots of sauerkraut/kimchi etc and apple cider vinegar to feed the good bugs.
I did react to the first FMT with stomach cramps but had no reaction to the 2nd. I'm going to have the 3rd done tomorrow. I will let you know how I get on. If you have any questions please ask.
Hugs and flower pictures to all

 

[MaximilianKohler]

I understand that Dove Clinic gets their stool from Taymount's donors right?

I don't have other questions for now but hope you will update the OP as you progress. Thanks

lots of sauerkraut/kimchi etc and apple cider vinegar to feed the good bugs

I'm guessing they told you that? Current evidence doesn't support it: https://archive.fo/CT0xW

There is also no evidence that fruit should be avoided, except by people who have specific trouble with carbs or sugars. Otherwise fruits are very healthy.

 

[YippeeKi YOW !!]

@Goldfishbowl
I applaud your courage and wish you fair winds and smooth seas, and the best of all possible outcomes.

 

[Goldfishbowl]

Yes the Dove Clinic do get the stools from the Taymount Donors.
The protocol is to have the 10 treatments over 2 weeks with the weekend off. But as I am so sensitive to medication and my immune system is compromised hence the Candida. I am having one a week for 10 weeks. I am now on week 5 and as yet I don't feel any better but do not feel any worse.
I agree fruit is good for you but not a good idea if you have fungus on your bloodstream.
Will keep you posted.
Hugs to all

 

[bertiedog]

Good luck with your treatment @Goldfishbowl and I will follow your treatment with great interest as I have had severe gut issues in the past few years.

Can no longer tolerate any dairy and have been gluten free for a long time plus I have a Candida issue and nasty bugs like Klebsella showing up in my last Ubiome stool test.

Pam

 

[Goldfishbowl]

Hi Bertie dog, Can you tolerate Kefir? The lactose changes in fermentation making it digestible for someone who is dairy intolerant.
Kefir is so good for killing Candida.
Also SYMPROVE is good as it contains live bacteria that get through to your large intestine. Unfortunately I couldn't tolerate any of these orally as my central nervous system goes into overdrive and makes my M E so much worse, hence the FMT.
My Dr said the FMT will shut down the virus causing my M E and kill the candida which has become systemic so making me feel really rough.
I am on a really strict diet to heal my gut but I don't mind to be honest I would eat coal if it made my M E better.
Also I've been told it can take up to 8 weeks after the last treatment before the immune system works properly. I am cautiously optimistic.
Hugs to all

 

[2012]

@Goldfishbowl

Please keep us updated along the way. I will be very interested to know how you go and whether you find any changes or improvements even ones that may not be directly related with ME.

FMT has been sitting on the backburner for a long time and whilst I’m unsure whether it will help my ME I have more hope it might atleast help other immune related issues I have developed along the way.

Thanks and all the best wishes for your health.

 

[YippeeKi YOW !!]

@Goldfishbowl
Thank you for the update. Have been wondering how it was going for you.

 

[bertiedog]

Hi Bertie dog, Can you tolerate Kefir? The lactose changes in fermentation making it digestible for someone who is dairy intolerant.
Kefir is so good for killing Candida.

I can only tolerate about 2 teaspoons of it added to my Alpro soya yoghurt a few times a day. If I add more then it seems to build up and cause loose bowels which irritate my IBS.

I seem to be doing ok with S Boulardi by Optibac and also some of their other probiotics. I have just started one today which is meant for children but it does have FOS added so not sure if it will be tolerable. Only going to take one sachet daily which is recommended for babies!

Also I can tolerate Healthspan's Super 10 probiotic ok but I do try and change what I am taking from week to week but somedays I can take the Healthspan one with breakfast and the Optibac S Boulardi with lunch and evening meal. I will go on like that for a few days and then if I overdo things then the gut flares and I am in trouble and my health goes downhill.

Definitely when the IBS flares then I get insomnia because of my gut and then I am worse the next day so there is no question for me there is a relationship to how I feel and what is going on with my gut.

Sincerely hope that you will get some benefits very soon.

Pam

 

[Goldfishbowl]

Hi Bertie dog, You are certainly right there is a relationship between the gut and the brain. I have been told that the gut is the "second brain". You seem to being doing all the right things with the pre and pro biotics.

One thing the Dove Clinic use is brewers yeast. You may like I did think that yeast is not good. It fact it plays a vital role in our innate immune systems. This is the immune system we are born with and not the acquired immune system we build up after we are born. The innate immune system is good at killing loads more bugs than the acquired immune system.
When I went to the Dove Clinic last year and had tests done it revealed that my innate immune system was not working. It was just sitting there in the background doing nothing.
Unfortunately I couldn't tolerate brewers yeast so this is another reason for doing the FMT.
My Dr said that we cannot live without an innate immune system. But we can live without an acquired one. This shows how important it is. There will be letters now you wait and see!!!!
Have had 5th treatment today and am shattered as it's a long journey.
Will keep in touch. Hugs and flowers to all.

 

[Goldfishbowl]

Hi, Sorry I haven't written on this post for a while.
I have now had 8 FMT transplants and a session with the nutritionist.
With some of the transplants I have had quite a lot of cramp which has subsided over night (lots and lots of wind)and then on others I have had no reaction at all.
The transplants are from different donors and each one contains a specific bacteria/yeast/pro biotic. So this could account for the gut having different reactions depending on the transplant.
The whole procedure takes about an hour but it only takes a few minutes to insert the donors stools via a rectal catheter which is then followed by a saline solution. You are laid in the foetal position whilst this is done (under 10 mins).You then lay with your feet slighty raised for 10 mins then you lay on your right side for 10 mins and then you sit up for 10 mins.
I have managed to keep them in for a day with no accidents at all.
As I mentioned before it can take up to 8 weeks before any effects become apparent.
Do I feel any benefit so far? One thing I have noticed is the (gold fish bowl effect) has gone.
My vision ( since becoming really rough)always seemed to me as if I was looking through a pain of glass,which felt like I was spaced out.
I do have more energy but still have to really pace myself as I run out of energy really quickly.
I still have my fungal infection which I know is not candida albicans so is much more invasive.
So not a lot to report,but still very early days.
The nutritionist was very helpful and the diet I am on is the paleolithic diet. But I am not allowed any sugar at all.
I'm still eating sauerkraut and drinking keifer and apple cider vinegar also taking Bimuno. This is a fibre which feeds all the good bacteria.
Still eating lots of veg ( those that grow above ground only). Also oatcakes/ ryvita ( no bread).
Little fruit/meat/fish but lots of nuts.
One thing I found out was the rapeseed oil is far healthier than olive oil as it helps reduce bad cholesterol levels. So I have switched to using this for all my cooking and to dress salads.
I only have 2 more treatments left and I am still cautiously optimistic but I cant expect my gut to heal within 2 months when it had been out of kilter for over 30 years.
Enclosed photo is taken from Blackgang viewpoint and looks over to Tennyson down in Freshwater Bay the home of the poet Alfred Lord Tennyson. It was taken last Saturday.
Hugs to all

 

[ljimbo423]

As I mentioned before it can take up to 8 weeks before any effects become apparent.

I only have 2 more treatments left and I am still cautiously optimistic but I cant expect my gut to heal within 2 months when it had been out of kilter for over 30 years.

I was reading a study done on autistic children a few weeks ago. Where they were given FMT to improve their symptoms and it worked incredibly well, although I don't remember the time frame for them to first notice improvements.

I do remember that their gut microbiome continued to improve at least 2 years later when they did a follow up! That really surprised me!

Best of luck to you, I really hope you are able to put your CFS behind you.

Beautiful pic too!

 

[2012]

I only have 2 more treatments left and I am still cautiously optimistic but I cant expect my gut to heal within 2 months when it had been out of kilter for over 30 years.

Hi @Goldfishbowl
Hope you are doing ok? I look forward to hearing an update when you are up to it and I do hope you are finding improvements even now you have finished the FMT.

Thanks and all the best wishes!

 

[Grigor]

Very cool. Keep us posted.

https://www.sciencedirect.com/science/article/pii/S2452231719300077

 

[Goldfishbowl]

Hello all, Sorry for not replying sooner.
The FMT has helped but it did not clear my fungal infection. Probably because I couldn't tolerate the live bacteria that I had to take orally to support the FMT. I have to see my Dr at the end of August to decide what else can be done to support my gut. I'm glad I did the FMT and I am sure it has done a lot of good.

I haven't written on here for a while for two reasons. Firstly I replied to a post and got into conflict with a senior member so much so my input was moderated. I didn't expect this from this forum and was taken aback and decided not to participate.
Secondly because my partner died 3 years ago and my 21 year old son is rarely at home I decided to get a puppy.
Now I am so tired that I've forgotten I'm unwell.
He's a Cavalier king charles spaniel called Charlie and I've had him for a month now. He is now 12 weeks old and absolutely gorgeous...

Love to all

 

[chger]

Beautiful dog! Dogs are great Partners and he will do good.
And also Great to hear that FMT certainly Helped you. Could you specify more for what symptoms it Helped?

Thanks !