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- Joined
- Jul 13, 2023
- Messages
- 40
Hey Guys,
I have a 10+ year history of health issues, I've been sick since I was 17 in 2009 ( I do have a multi page document of everything if anyone would like to read it, but through experience, it can be tiring to read that much stuff in one sitting).
My first FMT experience was for resistant C Diff I had gained during treatment for what doctors suspected was lyme disease.
Some pretext, is I did feel significantly better during month 3 of that protocol, not because of lyme i assume, but because it was killing everything in my intestinal track
protocol consisted of
IV merepenem
IV cipro
IV Clindamycin
Oral Septra
Oral Flagyl
Oral Fluconazole
and a few others I can't remember right now
I had non stop diarrhea, but gained 15 pounds in a month, and could do pretty reasonable exercise (had a port in my chest so was limited by that), and my facial and body color improved a lot, I looked mostly healthy (in fact my dating profile picture is a picture from this time, and no one would ever know I had an IV port in my chest)
Anyways we did that protocol for 3 months, switched for 4 months (went back to how I was, bedridden, and in pain, useless)
We retried the protocol that was helping again, and nothing
it changed nothing this time
did nothing
My assumption now is other bacteria took place of what was killed off the first time, and these bacteria weren't affected
(Should also say my diet was only chicken and cucumbers at this time)
I finished the 10 month IV treatment still being where I started
I had contracted C Diff at some point, but surprisingly my symptoms weren't any different with it
I was still constipated, no bloody stool etc
We did 3 rounds of flagyl
and 3 rounds of vanco with no help.
I will set the stage for the profound effects of what's next
because I've seen some not so great things said about Open Biome
and my experience was different (both times)
I met my ex fiancé the end of May 2016
I couldn't drive a car
she had to drive for our first date
I got winded walking across the house
I was pretty useless
for some reason at the time she was interested in a fairly broken guy
that was determined to get better at any cost
We started dating June 14th
and less than 2 weeks later I got my fmt June 25th
she drove me and waited for me to get it
(because that's exactly what you want to put your new girlfriend through right lol)
Anyways, this sample was open biome
all they told me was it was from a student at harvard
I got it via colonoscopy
and not much changed at first other than terrible cystic acne that thankfully went away
But literally 2 weeks in and it was a game changer
I could drive no problem
I could go to the park and walk how ever long my girlfriend waned
sex, not a problem (in fact my drive was ridiculous now)
I could get a job
and go to school (so I started doing in school classes)
I had my mind set on getting my degree on molecular cellular biology, I just wanted to do whatever I could to help those like me.
This lasted for about a year until I had a respiratory infection, and then of course needed antibiotics.
So guess what, I fell back to where I was
it stressed me out
it stressed my GF out since we now lived together
I had school, I had a job now
I couldn't be bed ridden...again.
I panic searched for any fmt clinic i could find that didnt require a c diff infection to get
I also didnt have another year to wait to get another open biome sample even if i had c diff
My options at the time in 2017 were really limited
I had taymount, and newberry
I can't fly on planes because of my constant sinus inflammation
and of course, only being able to eat 2 foods is hard enough to find at times when foods accessible here.
Taymount wouldnt ship, and required the patient be infused there
newberry wouldnt ship either, but would allow me to have someone pick them up
So I took out an $8000 loan (so awesome when I'm only making $10 an hour right?) to pay the $5000 for 40 samples and $3000 to send a friend to Argentina (my determination right? lol)
She gets there, enjoys the time at the airbnb, gets the samples, and then when trying to get on the plane, the airline seizes the samples (f**k me right...), just spent $8000 for the airline to be a dick.
Anyways, Newberry worked with another client to help me out (the people at newberry were awesome)
The guy lived in Wisconsin, and agreed to split his samples with me, and then newberry was going to fly someone up and give me 40 more samples, and then I'd just ship him 20 to recoup.
So literally next day after talking to this guy I never met that was agreeing to give me samples
I got another friend to drive me 28 hours to Wisconsin (non stop)
and 28 hours back (we maybe slept for 4 hours), for these 20 samples
Any let me say, they were worth it...ish
Like open biome, they allowed me to function again, work, go to school. I was able to think clearly etc, I could even eat kale and broccoli for a short time
But 3 weeks after those 20 ran out
I started to regress again
school got hard again, brain fog took over, the stool didnt graft.
I tried many things to help me get through the semester
the only thing that helped was potassium sorbate (because drinking mold inhibitor seemed smart i guess, but I tried everything else, and others had success with it)
Anyways, it got me through the semester, and I took off the next until I could stabilize again.
It took a little while to get the second batch of samples
they would only fly into new york
so we had to drive, and stay up there a week
which was fine, but inconvenient
I started the samples up there after picking them up
and these did nothing
they didn't have negative effects
they just didn't do anything at all
I was bummed, and kind of pissed
but whatever this donor was
his stool did nothing at all
So out of luck i scrambled to find new things
I did eventually find probiotics I could tolerate, and found help in this combo
Lactobaccilus Plantarum
Bifidobacteria Longum
Megasporebiotic
As well as houttuynia supreme and some other supplements
This got me back to functional for a short time
but i also had my biggest relapse right after this
my intestines were now very sensitive to anything acidic
i severely reacted to houttuynia now
i no longer tolerated any of the probiotics that helped
and I was losing weigh fast (I'm 6'1", and went from 155 to 128 in a month)
I got to where I could barely walk again
and everything I tried just caused a reaction
I went from constipation to severe diarrhea
and even had bloody stool
the blood was only stopped by oral budesonide (which I still take)
I didnt have C Diff again yet
but I knew fmt would help
I looked for any source of fmt, and ran into MG Infusions
apparently he had been a donor for a clinic before
and had been tested etc, so I trusted it
I spent well over $5000 on his samples hoping they would help
I almost lost faith in fmt because of his samples
I just assumed I was that reactive now
but they did nothing
didnt even firm up my stool at all
still non stop diarrhea
even with getting a fresh in person sample
nothing changed
I did eventually get C Diff again later
so I tried his samples (because of covid, Open Biome was closed)
and his samples didnt even get rid of the C Diff
waste of money
do not recommend even for C Diff
Very nice guy, but he just does not have good stool sadly.
I went through many rounds of vanco and dificid with no relief because whatever strain i get is resistant
I finally was able to get scheduled for another open biome sample july 2021 (they started again may 2021)
and like the first time it was a game changer
I could do mild push ups and pull ups
ride my one wheel
work on my car
it was a big change
and again sex was a thing again
felt like the same donor all over again
(now i will say i still have a lot of healing to do, i was much better the first time, and my body is way more damaged now, but it made a huge difference for the current condition of my health)
This sample sadly only lasted til December when my rheum prescribed injectable methotrexate and then sulfasalazine
I was then back to diarrhea and being stuck in bed.
I tried other meds until I started looking for fmt again
and stumbled upon microbioma.org
some people had said they had good luck
they seemed legit
and i was yet again
desperate
I got the microbioma samples in march and started doing them right away
I did 1 a day for 3 days in a row the first week
and 1 more a week later
at this time i didn't notice much, my stool was formed again
not much as far as activity goes etc
I did the 5th one another week later and then the symptoms hit
i felt burning on my insides
my lower back burns
it feels like ive been eating non stop kimchi and lactic acid producing bacteria, or just normal store bought bacteria that I do awful with.
The only positive is the normal ish looking stool
but otheriwise I feel worse than I did
I also despite not having physical activity have started getting weird bruising (never been a symptom before)
A big one on my right bicep
I also did get the flu week 4, but unsure if caused by the sample
the 5th sample seemed to either be the breaking point, or just have terrible bacteria
I will say the owner is very nice
very helpful
any maybe others do well with it
but this is the first one I've actually done bad with
the rest just kind of did nothing if they weren't going to help.
Right now my intestinal burning and irritation is so bad that it feels like its affecting the nerves in my abdomen
as now i can't even get a boner if I tried (similar area)
where as before it wasn't a problem, even while feeling awful and pooping 20+ times a day
I'm hoping to try another donor soon to flush this one out
we do need easy access to quality fmt
I've seen how amazing it can be
and it's sad that we don't have more options yet with how long fmt has been around
Btw the illnesses I'm treating are MCAS and Sjogrens
Original 16 Apr 2022 (3 comments).
I have a 10+ year history of health issues, I've been sick since I was 17 in 2009 ( I do have a multi page document of everything if anyone would like to read it, but through experience, it can be tiring to read that much stuff in one sitting).
My first FMT experience was for resistant C Diff I had gained during treatment for what doctors suspected was lyme disease.
Some pretext, is I did feel significantly better during month 3 of that protocol, not because of lyme i assume, but because it was killing everything in my intestinal track
protocol consisted of
IV merepenem
IV cipro
IV Clindamycin
Oral Septra
Oral Flagyl
Oral Fluconazole
and a few others I can't remember right now
I had non stop diarrhea, but gained 15 pounds in a month, and could do pretty reasonable exercise (had a port in my chest so was limited by that), and my facial and body color improved a lot, I looked mostly healthy (in fact my dating profile picture is a picture from this time, and no one would ever know I had an IV port in my chest)
Anyways we did that protocol for 3 months, switched for 4 months (went back to how I was, bedridden, and in pain, useless)
We retried the protocol that was helping again, and nothing
it changed nothing this time
did nothing
My assumption now is other bacteria took place of what was killed off the first time, and these bacteria weren't affected
(Should also say my diet was only chicken and cucumbers at this time)
I finished the 10 month IV treatment still being where I started
I had contracted C Diff at some point, but surprisingly my symptoms weren't any different with it
I was still constipated, no bloody stool etc
We did 3 rounds of flagyl
and 3 rounds of vanco with no help.
I will set the stage for the profound effects of what's next
because I've seen some not so great things said about Open Biome
and my experience was different (both times)
I met my ex fiancé the end of May 2016
I couldn't drive a car
she had to drive for our first date
I got winded walking across the house
I was pretty useless
for some reason at the time she was interested in a fairly broken guy
that was determined to get better at any cost
We started dating June 14th
and less than 2 weeks later I got my fmt June 25th
she drove me and waited for me to get it
(because that's exactly what you want to put your new girlfriend through right lol)
Anyways, this sample was open biome
all they told me was it was from a student at harvard
I got it via colonoscopy
and not much changed at first other than terrible cystic acne that thankfully went away
But literally 2 weeks in and it was a game changer
I could drive no problem
I could go to the park and walk how ever long my girlfriend waned
sex, not a problem (in fact my drive was ridiculous now)
I could get a job
and go to school (so I started doing in school classes)
I had my mind set on getting my degree on molecular cellular biology, I just wanted to do whatever I could to help those like me.
This lasted for about a year until I had a respiratory infection, and then of course needed antibiotics.
So guess what, I fell back to where I was
it stressed me out
it stressed my GF out since we now lived together
I had school, I had a job now
I couldn't be bed ridden...again.
I panic searched for any fmt clinic i could find that didnt require a c diff infection to get
I also didnt have another year to wait to get another open biome sample even if i had c diff
My options at the time in 2017 were really limited
I had taymount, and newberry
I can't fly on planes because of my constant sinus inflammation
and of course, only being able to eat 2 foods is hard enough to find at times when foods accessible here.
Taymount wouldnt ship, and required the patient be infused there
newberry wouldnt ship either, but would allow me to have someone pick them up
So I took out an $8000 loan (so awesome when I'm only making $10 an hour right?) to pay the $5000 for 40 samples and $3000 to send a friend to Argentina (my determination right? lol)
She gets there, enjoys the time at the airbnb, gets the samples, and then when trying to get on the plane, the airline seizes the samples (f**k me right...), just spent $8000 for the airline to be a dick.
Anyways, Newberry worked with another client to help me out (the people at newberry were awesome)
The guy lived in Wisconsin, and agreed to split his samples with me, and then newberry was going to fly someone up and give me 40 more samples, and then I'd just ship him 20 to recoup.
So literally next day after talking to this guy I never met that was agreeing to give me samples
I got another friend to drive me 28 hours to Wisconsin (non stop)
and 28 hours back (we maybe slept for 4 hours), for these 20 samples
Any let me say, they were worth it...ish
Like open biome, they allowed me to function again, work, go to school. I was able to think clearly etc, I could even eat kale and broccoli for a short time
But 3 weeks after those 20 ran out
I started to regress again
school got hard again, brain fog took over, the stool didnt graft.
I tried many things to help me get through the semester
the only thing that helped was potassium sorbate (because drinking mold inhibitor seemed smart i guess, but I tried everything else, and others had success with it)
Anyways, it got me through the semester, and I took off the next until I could stabilize again.
It took a little while to get the second batch of samples
they would only fly into new york
so we had to drive, and stay up there a week
which was fine, but inconvenient
I started the samples up there after picking them up
and these did nothing
they didn't have negative effects
they just didn't do anything at all
I was bummed, and kind of pissed
but whatever this donor was
his stool did nothing at all
So out of luck i scrambled to find new things
I did eventually find probiotics I could tolerate, and found help in this combo
Lactobaccilus Plantarum
Bifidobacteria Longum
Megasporebiotic
As well as houttuynia supreme and some other supplements
This got me back to functional for a short time
but i also had my biggest relapse right after this
my intestines were now very sensitive to anything acidic
i severely reacted to houttuynia now
i no longer tolerated any of the probiotics that helped
and I was losing weigh fast (I'm 6'1", and went from 155 to 128 in a month)
I got to where I could barely walk again
and everything I tried just caused a reaction
I went from constipation to severe diarrhea
and even had bloody stool
the blood was only stopped by oral budesonide (which I still take)
I didnt have C Diff again yet
but I knew fmt would help
I looked for any source of fmt, and ran into MG Infusions
apparently he had been a donor for a clinic before
and had been tested etc, so I trusted it
I spent well over $5000 on his samples hoping they would help
I almost lost faith in fmt because of his samples
I just assumed I was that reactive now
but they did nothing
didnt even firm up my stool at all
still non stop diarrhea
even with getting a fresh in person sample
nothing changed
I did eventually get C Diff again later
so I tried his samples (because of covid, Open Biome was closed)
and his samples didnt even get rid of the C Diff
waste of money
do not recommend even for C Diff
Very nice guy, but he just does not have good stool sadly.
I went through many rounds of vanco and dificid with no relief because whatever strain i get is resistant
I finally was able to get scheduled for another open biome sample july 2021 (they started again may 2021)
and like the first time it was a game changer
I could do mild push ups and pull ups
ride my one wheel
work on my car
it was a big change
and again sex was a thing again
felt like the same donor all over again
(now i will say i still have a lot of healing to do, i was much better the first time, and my body is way more damaged now, but it made a huge difference for the current condition of my health)
This sample sadly only lasted til December when my rheum prescribed injectable methotrexate and then sulfasalazine
I was then back to diarrhea and being stuck in bed.
I tried other meds until I started looking for fmt again
and stumbled upon microbioma.org
some people had said they had good luck
they seemed legit
and i was yet again
desperate
I got the microbioma samples in march and started doing them right away
I did 1 a day for 3 days in a row the first week
and 1 more a week later
at this time i didn't notice much, my stool was formed again
not much as far as activity goes etc
I did the 5th one another week later and then the symptoms hit
i felt burning on my insides
my lower back burns
it feels like ive been eating non stop kimchi and lactic acid producing bacteria, or just normal store bought bacteria that I do awful with.
The only positive is the normal ish looking stool
but otheriwise I feel worse than I did
I also despite not having physical activity have started getting weird bruising (never been a symptom before)
A big one on my right bicep
I also did get the flu week 4, but unsure if caused by the sample
the 5th sample seemed to either be the breaking point, or just have terrible bacteria
I will say the owner is very nice
very helpful
any maybe others do well with it
but this is the first one I've actually done bad with
the rest just kind of did nothing if they weren't going to help.
Right now my intestinal burning and irritation is so bad that it feels like its affecting the nerves in my abdomen
as now i can't even get a boner if I tried (similar area)
where as before it wasn't a problem, even while feeling awful and pooping 20+ times a day
I'm hoping to try another donor soon to flush this one out
we do need easy access to quality fmt
I've seen how amazing it can be
and it's sad that we don't have more options yet with how long fmt has been around
Btw the illnesses I'm treating are MCAS and Sjogrens
Original 16 Apr 2022 (3 comments).
- FMT Clinics
- I included all required info