This article is kind of blowing my mind

[2Cor.12:19]

thanks for the info. why didnt i ever come across this idea of ebv damaging neuromodulator sells in the gut before?? after 27 yrs of research? lol wtf

one article even named norovirus, another cfs-causing infection, as capable of doing this. if i had heard such a believable sounding mechanism before, my decisions would have been much different. i even remember exactly all the phases my gut went through after the EBV. but all i did was take years and years of toxic antimicrobials. this is so frustrating and depressing.

have you ever thought about fecal transplant?

Don't beat yourself up - most of us have had to figure these things out on our own. I've never had a doctor yet who understood EBV and/or ME/CFS - even my neurologist classified my PN as idiopathic. I've had to take my various diagnosis' over the years and try to figure them out too.

As for fecal transplant, no I haven't even considered it. The thought grosses me out.

 

[Hufsamor]

have you ever thought about fecal transplant?

I have…
I almost went for it 4-5 years ago.
I even half way chose myself a donor.
But all the testing would be very expensive, and my preferred donor lives a bit away, and the one thing and the other….

I have read about different researches getting different results.
One Norwegian research got very good results, and the doctor thought it had to do with the donor. A very good donor might give very good results, while a not so good donor does not.

 

[Daffodil]

Don't beat yourself up - most of us have had to figure these things out on our own. I've never had a doctor yet who understood EBV and/or ME/CFS - even my neurologist classified my PN as idiopathic. I've had to take my various diagnosis' over the years and try to figure them out too.

As for fecal transplant, no I haven't even considered it. The thought grosses me out.

wow. i would bathe in feces if i thought it would help. i speak to people regularly who have improved their various illnesses with this. a couple of people have cured their bipolar with it. they are so tired of making enemas and capsules, they drink it straight. one even has a video of himself doing it.

 

[Daffodil]

I have…
I almost went for it 4-5 years ago.
I even half way chose myself a donor.
But all the testing would be very expensive, and my preferred donor lives a bit away, and the one thing and the other….

I have read about different researches getting different results.
One Norwegian research got very good results, and the doctor thought it had to do with the donor. A very good donor might give very good results, while a not so good donor does not.

you are 100% correct. i have spent the last 4 months looking for a good donor. it is the hardest thing. it is like free money but almost no one wants to do it. i was scammed for a lot of money which was a big blow, too. i also spent 1000 on poop supplies but still have no poop. i am about to give up because it is useless. the people who are perfectly healthy with very healthy families, are also successful, busy, have families, and do not need the extra 800 a month or w/e. especially not in the city i am in. I may as well be in manhattan.

in general, there are enough people grouped on FB who have had positive long lasting results, that i do intend on doing more of it. the best poop i have found so far is unfortunately very expensive..microbioma.org

there are a few other players...one new one is opensourcebiome.com

as for the people who have managed to find "super donors" and have still not fully recovered, i am guessing there is something else messing with their motility....or of course, a chronic infection or w/e. maybe spine issues of some kind

 

[Daffodil]

thought i would give a quick update for those of you not in the FB groups. did 6 enemas from microbioma.org several months ago. in the months following, i realized i had not had aching in my lymph nodes for a long time. i had begun to have pain in my hands which woke me up at night. I thought this was probably the beginning of RA. That was also gone. I lost about 8 lbs and noticed i was a little less ravenous all the time. It was easier to fast a few extra hours if i had to.

I tried hard to find a local donor, thinking I likely needed a lot of FMT's and could not afford to order again.

5 months later, I could not find a local donor and felt very desperate so despite the cost, made another order from microbioma.org This time, I ordered capsules because a few people said they worked better than the enemas. I took the capsules 2 weeks ago and had 2 days where I had the urge to go outside, even though I did not have to. This hasnt happened in a long time. ALso noticed that my sinuses feel somewhat clearer.

So very tiny improvements - not bad given the length of my illness (27.5 yrs). A friend on FB, sick just 1 yr and 20 yrs old, ordered capsules and was 90% better in 2 months

 

[Judee]

Omgoodness...I'm so happy for you.

Finally, it might be working for you!!!! Hurray!!!!

If you can, keep us updated.

Thanks, @Daffodil.

Edit: Was there a difference in the price between the bottles of liquid vs the capsules?

 

[Daffodil]

Omgoodness...I'm so happy for you.

Finally, it might be working for you!!!! Hurray!!!!

If you can, keep us updated.

Thanks, @Daffodil.

Edit: Was there a difference in the price between the bottles of liquid vs the capsules?

thanks!! long process ahead if it helps, for sure...

120 capsules costs the same as 6 enemas.

not sure if you are aware but lots of fecal drama going on between 2 poop selling competitors. accusations of slander and lies.

xox

 

[Judee]

not sure if you are aware but lots of fecal drama going on between 2 poop selling competitors. accusations of slander and lies.

Oh, no. Not sure why people have to be that way if everyone is wanting to help others get better. There are a lot of sick people in the world so plenty of customers for years and years to come, I would think.

 

[tyson oberle]

thanks!! long process ahead if it helps, for sure...

120 capsules costs the same as 6 enemas.

not sure if you are aware but lots of fecal drama going on between 2 poop selling competitors. accusations of slander and lies.

xox

I went on this website and I only saw 6 bottles (6 enemas) being sold. I didn't see that they also sell 120 capsules.
And do they accept payment only via a bank transfer?

 

[kangaSue]

@Daffodil Even small improvements are a big positive in my book.
I hope you are "feeding" that refreshed microbiome with lots of fibre as personally, I think this is what can make or break a sustained benefit from doing FMT, and something I couldn't get my GI system to accept.

ALso noticed that my sinuses feel somewhat clearer.

My daughter has a big problem with sinus infections and finds that serrapeptase helps significantly with that.

 

[Daffodil]

y

I went on this website and I only saw 6 bottles (6 enemas) being sold. I didn't see that they also sell 120 capsules.
And do they accept payment only via a bank transfer?

yes, only bank transfer. i think you have to click on "contact" and then, in the email, you can indicate you want the 120 capsules instead.

 

[Daffodil]

@Daffodil Even small improvements are a big positive in my book.
I hope you are "feeding" that refreshed microbiome with lots of fibre as personally, I think this is what can make or break a sustained benefit from doing FMT, and something I couldn't get my GI system to accept.

My daughter has a big problem with sinus infections and finds that serrapeptase helps significantly with that.

thanks has she ever had that marcons fungus test where they stick a swab in the nose?

 

[kangaSue]

thanks has she ever had that marcons fungus test where they stick a swab in the nose?

No, I don't think she has. I could be wrong on that score though and it's not a test I've heard of before so I'll mention it to her thanks.

 

[Daffodil]

No, I don't think she has. I could be wrong on that score though and it's not a test I've heard of before so I'll mention it to her thanks.

do you know there are sinus probiotics you can buy? a friend of mine had a long running sinus inflammation and he was miserable cuz he was a singer....he finally tried one of the nasal probiotics and he is all better now. i think i saw one on amazon

 

[kangaSue]

do you know there are sinus probiotics you can buy? a friend of mine had a long running sinus inflammation and he was miserable cuz he was a singer....he finally tried one of the nasal probiotics and he is all better now. i think i saw one on amazon

No I haven't come across those either so thanks and I'll get her to check these out too.

 

[anne_likes_red]

all these years not one doctor suggested testing for gut motility issues. has anyone out there tried drugs that help motility? did they help?

Not drugs, but I just wanted to mention that Mutaflor had a noticible positive effect for me. x

 

[tyson oberle]

you are 100% correct. i have spent the last 4 months looking for a good donor. it is the hardest thing. it is like free money but almost no one wants to do it. i was scammed for a lot of money which was a big blow, too. i also spent 1000 on poop supplies but still have no poop. i am about to give up because it is useless. the people who are perfectly healthy with very healthy families, are also successful, busy, have families, and do not need the extra 800 a month or w/e. especially not in the city i am in. I may as well be in manhattan.

in general, there are enough people grouped on FB who have had positive long lasting results, that i do intend on doing more of it. the best poop i have found so far is unfortunately very expensive..microbioma.org

there are a few other players...one new one is opensourcebiome.com

as for the people who have managed to find "super donors" and have still not fully recovered, i am guessing there is something else messing with their motility....or of course, a chronic infection or w/e. maybe spine issues of some kind

So have you also used www.opensourcebiome.com for fecal transplants? If not, why? I went on their website and it looks like all their donors are under the age of 2 years old. I wonder if baby donors would be better, do you know?

 

[Daffodil]

So have you also used www.opensourcebiome.com for fecal transplants? If not, why? I went on their website and it looks like all their donors are under the age of 2 years old. I wonder if baby donors would be better, do you know?

no one really knows. when i questioned the seller re: family history of baby, he did not answer. i also asked re: gi mapping tests and no answer. so....i cant trust it yet. also they use bitcoin .....its all a little too unorganized for me. i have used only microbioma so far.

 

[kangaSue]

I wonder if baby donors would be better, do you know?

A baby's microbiome is lacking in diversity compared to adults, but not out of the question;
https://thegutclub.org/fmt-breastfed-baby-poop-donor/

 

[motorhead]

also they use bitcoin .....

Wonder why.