On Tuesday we received some distressing news from home.
Our beloved dog, Amber, had become largely immobilized and weak -- too weak to
eat or drink. Over the next few days, my mind was preoccupied with her and
those we had entrusted to care for her. Suddenly, my FMT was secondary. My
sleep from Tuesday on was restless; my mood quiet and saddened. I found it
difficult to leave my room at our rented cottage to join Landon and Bill for
meals. Landon brought me food in bed, where I tried to rest as much as
possible. My chest was tight, like a tight leather belt that never lost its
grip. I had a hard time thinking positively through the transplant procedure. I
managed to meditate a bit, which helped. My lack of
restful sleep meant the stairs were again more difficult on Wednesday. I wore
my boots, but I didn't get the lift I had experienced in the days before. My energy was gone.
On our 8th treatment day (Wednesday), Landon capably
did my transplant with the nurses' guidance. My FMT treatment will continue at
home, so Landon will be on deck to do the procedure. Although the nurses teach
individuals how to self-administer the transplant, this wasn't a viable option
for me and my fumbly MS fingers. The procedure requires transferring the thawed
microbes into a beaker, adding some resistant starch from the Bimuno powder for them to munch on, and
diluting with saline. Then, the precious material is drawn up into a syringe
and discharged slowly into the colon through a rectal catheter. A final
saline rinse makes sure all microbes exit the catheter. There are just too many
steps for me to drop something or contaminate or waste the sample. Besides, if
I did it myself, who would give me an abdominal massage afterwards??
I was so weak that I dreaded what would happen if I
had to make it to the toilet in the waiting room in a hurry. So, I decided
staying in the treatment room through Landon's appointment, like I did the day
before, was my best option. The toilet was close by, private, and accessible.
No more cramped British telephone booth with two stairs! This allowed me to
retain my implant from 90 to 120 minutes. Not moving around really helped.
Landon elected not to self-administer his transplant. He is going to give me
his two samples of microbes we each get to bring home, so he won’t have to
do this on himself. I am looking forward to receiving transplants at home, where I
can rest indefinitely. A nurse suggested I do them just before bed, which I
think will work very well.
Days 9 and 10
The stairs got increasingly difficult Thursday and
Friday. On Thursday, I fell in the building lobby at the base of the stairs.
Embarrassed, I declined help from a passer-by, and used my arms to lift myself
backwards up two steps, then got Landon to assist me to a stand. I know I must
have bruises from the fall, but I haven't bothered to look.
The second week went much more quickly than the
first. I was so tired I actually slept for a bit through one of my rest
periods. Staying in the treatment room through Landon's appointments helped me retain the transplant for up tp 2 hours. I can't tell if there's a change going on with my gut or if I'm getting better at retention through practice. It did surprise me, though, that I managed so well despite being worried about Amber and very fatigued. I didn't lose much of the transplants at all in the final two days. And, as I said before, there's no way you can lose most of the microbes -- they cling to the colon walls within 20 minutes and are well equipped not to get "flushed"!
The nurses were in full education mode in our final days and talked to us
through at least part of our post-transplant rest about diet, storage of
specimens, and monitoring our progress in the weeks and months to come. They advised us to think of 10 symptoms we can
monitor to track our improvement over time.
I came up with a list:
1. Leg spasms
2. Itchiness
3. Bladder voiding
4. Bowel regularity
5. Vertigo
6. Getting into bed effort
7. Bloating
8. Stomach ache
9. Toe numbness
10. BMI / Glucose fasting / HbA1c
I decided to put both leg spasms and itchiness on my list because
both got considerably worse during the treatment, although I had several 24
hour stretches with no spasms whatsoever. In any case, it appears FMT made a
difference in these two symptoms and I would like to track them over time. For
#3, I will track whether my bladder voids anything before I self-catheterize.
Because I have used urinary catheters since 2003-2004, my bladder became
totally dependent on them to void. A few months after my treatment for a venous
condition related to MS (CCSVI) in 2010, my bladder spontaneously started
voiding a little on its own sometimes when I sat on a toilet. For those of you who
self-catheterize, you know this is a big deal. My urologist muttered “Well,
that shouldn’t have happened..” when I told him. In any case, I would like to
see if the frequency of spontaneous voiding or my subjective observation of the volume changes. I was
already tracking bowel function, so that will be easy. For #5, I started having
vertigo before Christmas that had decreased in severity, but still happened
almost every time I looked up or put my head on a pillow. I didn’t realize my
vertigo disappeared totally around about my 4th FMT treatment
until I got home. I want to track to see if it has gone completely. I started tracking
how difficult it is for me to get into bed when I started the Wahls diet in 2014.
I wanted a measure of my energy each day and this seemed to be a good one. For
#7 and 8, I hope these things will disappear once my new microbiome has settled
in. So far, my gut is still disturbed following the flight home and my stress
over losing my dog. Because I noticed transient changes in my toe numbness
while I was receiving treatment, I thought I would continue to watch to see if
it changes again.
Finally, FMT has been established through research as changing the BMI
and diabetic risk factors of the recipient to more closely approximate the readings
of the donor. This study showed an average weight woman’s BMI (body mass index, calculate yours here) shot up over 6 points after FMT from an obese donor. There are also some really interesting mice studies showing lean mice gaining weight and obese mice losing weight if
they get fecal transplants from lean or obese humans. Clearly, FMT has caught the eye of researchers for much more than C.
difficile infections. In terms of obesity therapy, including insulin sensitivity,
this 2012 article cites promise for using FMT:
…there is
potential to modulate the gut microbiota of obese individuals to reduce the
capacity for their microbiota to efficiently extract calories from dietary
sources, in turn aiding weight reduction efforts. Faecal transplantation from a
lean to an obese person may be the easiest way to modulate the microbiota to
this end and recently Vrieze et al. (2012) described a clinical trial of faecal
transfer from lean to obese individuals resulting in an increase in insulin
sensitivity in the recipients. New knowledge such as the metagenome systems
biology described above may pave the way to more targeted, safer approaches to
the problem; if the foundation for the obese phenotype lies in reduced
diversity (Greenblum et al., 2012), for example, it may be possible to evaluate
the gut microbial ecosystem of an obese individual and to supply particular taxa
(possessing particular, missing metabolic potential) to ‘patch up’ the
dysbiotic microbial community and restore balance to the ecosystem. Although
not practically possible at present, knowledge and technology are rapidly
advancing to the point where such personalised medicine will become mainstream
in the not-too-distant future. (Source)
However, this study
disputes any relationship with donor BMI and recipient weight change. I had 10
different donors, so I won’t be unduly influenced by any of them. They must each
have a BMI of under 25, which should safeguard me from gaining weight! My
current BMI is (ack!) 26.6,
my hemoglobin A1c is 5.4 and my fasting glucose is 6.0. I cannot track these
daily, but will try to get it done at three or even six month intervals.
Only previous clinic patients can obtain transplants
for use at home (that’s for those of you who may be tempted to go straight to a
DIY solution!). This field of science is so new that clinics are acutely aware
that they are a potential target if there is transmission of harmful agents in
the fecal microbes. Not only are donors rigorously screened and monitored,
their samples are scrubbed and screened to 20 microns -- leaving behind most of
the fecal matter, hormones, food particles, and other substances that could
introduce complications into an immunocompromised individual. Our treatment
program consists of 10 transplants done in-clinic and two samples each for home
administration. Landon has graciously offered to give his two extra samples to
me. We also brought home some additional samples to divide among us as our
needs arise.
Timing of these home transplants is very much a bit
of guesswork. There simply is no research guiding our way. The clinic has some
experience with MS patients doing a once-a-month home plan, but they also cite
individuals who tapered from the daily clinic transplants to 2 home treatments
in one week, then one per week for several weeks, then once a month. We got
varying opinions on how long to wait once we get home before starting
treatment.
We also thought of a third option. We may head to
the UK next April for another visit with our friends. If so, we could pick up
additional transplant samples from the clinic and administer them ourselves in our hotel room
or our friends' home in England. Buying extra samples from the clinic and doing
self-administration is about half the price of having the clinic staff do these
"top-up" transplants. If money was no object, I would choose the
clinic. They are moving to a fully accessible facility so I won't encounter the physical challenges. I may do a bit of both -- back to the clinic for one or two transplants so I get
off to a good start and get a refresher course on procedure. Then, off to our
friends' house so we can visit while completing a few additional transplants.
The trouble is we will need our friends’ permission
to store the samples in their freezer! This, to us, is perfectly safe. We've
witnessed the extraordinary care needed to handle and transplant the materials.
We've been trained and have full confidence in our ability to do this safely
and efficiently. Now, we just have to convince our friends...
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