FMT treatment results! How many times do you take the plunge when you poop?

This is not something I track or even talk about...to anyone. But, here I am going to tell you what researchers like to call anecdotal evidence. A story. My story. But a story I dare say many of you out there also could tell. 

For many years -- most years -- I had very infrequent and difficult to pass stools. I tried every remedy short of drugs for decades, including 8-10 glasses of water daily, large doses of vitamin C and magnesium, prunes, psyllium powder and/or husks, probiotics, and a minimum 30g of fibre daily. Nothing was a total fix: I needed to employ ALL of these strategies to reduce the huge gap between bowel movements from 9 days (my record) to 3-6 days. In 2005 I began to take dicyclomine (an anti-spasmodic), which stopped my painful bowel spasms, but didn't do much to speed things up. 

I was trapped in bathrooms probably hundreds of times for hours at a time. I couldn't pass the hardened stool, but nor could I leave the immediate vicinity of a toilet. It didn't matter if I was at home or at a restaurant: I was being held as a hostage by my bowel. I wish to thank the many friends and family who helped me navigate these times with dignity and humour.

Stool that stalls through the colon gets drier. Toxins on their way out of the body get resorbed. Thus,

when I finally would go, the stool itself was hard, which then became my next nightmare (as if chronic constipation by itself isn't bad enough). 

A sad consequence of passing very hard stool is a clogged toilet. As I said, I never tracked this unfortunate side effect, but I'm sure the percentage of times I needed to "take the plunge(r)" was around 60% or more. Even toilets found hard stools impossible to pass!

My multiple sclerosis started affecting my legs in around 2001. I found standing at a toilet plunging exhausting. I remember how very tired my legs would feel as I used up the last of my energy just so I could flush the toilet.

I want to add that my life between bowel movements was pretty good. I typically would go a few times over a few days (sometimes diarrhea after the first stool passed), then a lengthy gap (constipation), then the cycle would repeat. Thus, I had security to know I would go days without another hostage/plunger episode while I was constipated. I strategically used glycerin suppositories to induce a bowel movement when I had a busy day ahead and my 3-6 days were up. On my bathroom days, I sat for hours on the toilet or lay on the bathroom floor, waiting. I even took a portable table and my laptop into the bathroom. If I was going to be trapped that long I was going to stay busy!

A physiatrist I met in 2010 told me my bowel management was my biggest health issue. Imagine his surprise and my delight that angioplasty to fix narrowed and stenosed jugular veins (CCSVI) in July 2010 also mostly normalized my bowel function. My bowel spasms disappeared immediately (good-bye dicyclomine!) and frequency was every 1-2 days without any long gaps within 6 months.

Let me introduce you to the Bristol stool chart. 

We were asked to track our bowel movements during preparation for our fecal microbiota transplant, during the 10 day procedure, and afterwards. I did not track stool type before my 2-month FMT preparation, but I did occasionally track frequency. Unfortunately, my calendars from pre-2011 are long gone. Thus, you have to take my word for it that pre-angioplasty my bowel movements were infrequent and generally hard to pass. I do have data from 2011 on frequency, though, which is one year post CCSVI angioplasty. Here's a 17 day period:

Average (over 17 days) = 17/9 = 1.88 days apart

This may not look normal to many people, but it was normal for ME after decades of chronic constipation. However, I still recall having to take the plunge on many occasions despite the greatly improved frequency, especially after a multi day gap. 

In August/September 2014, I started a modified paleo diet developed by Dr. Terry Wahls. Despite seeing benefits elsewhere in my health, my bowel function was thrown almost all the way back to my Dark Ages after just a short while on the diet. This is what prompted me to seek treatment to restore my microbiome. 

Here's some frequency data of bowel movements over 13 days after I started my new diet:

Average (over 13 days) = 13/5 = 2.6 days apart

Many of these post-diet change bowel movements were hard and needed plunging. My journal also details several instances of bad diarrhea -- all signs of a messed up gut. 

Now, to bring you up to date post FMT treatment. I track my bowel function religiously, so here's a recent  period:

Average (over 25 days) = 25/18 = 1.38 days apart

You'll notice a few key differences. The frequency is definitely improved. One large gap (17-18) was when we did a road trip, which may be the reason. The other gap (5-6) is unexplained. Most stools were Type 4 = normal! Also, I haven't had to use a plunger once since my FMT. My consistency, according to the Bristol Stool Chart, is always three or four (normal!) post FMT. Clearly, my microbiome is still trying to sort out my new normal. Gaps aren't necessarily a bad thing if stool quality is still normal. 

I have a theory with regard to what may be happening as my new microbes settle into their new home. Because stool quality is now normal, I wonder if the few issues I still have outstanding are related to neurological control. People with MS can have problems with bowel motility independent of problems with stool consistency (source). Several times over the past few months post-FMT I had difficulty initiating a bowel movement despite having a feeling like I had to go. I initially worried this could be a return to a constipated state; however, the consistency of the stool remains soft without being considered diarrhea. Basically, I think my microbes are doing their job, i.e., keeping the stool a normal consistency, but the state of my nerves that trigger elimination is not 100%.

~ Sandra

Up Yours! Why Artificially Cleaning Our Colons Might Not Be Such A Great Idea

Isn't the colon beautiful?

In 2004, I was scheduled for my first and only colonoscopy. I had been suffering from chronic constipation for decades, which had progressed into bloating and cramping as well. After ruling out parasites, my GP referred me to a gastroenterologist for a colonoscopy. The specialist told me I had two choices to clean out my bowel before the scope -- chemical or non-chemical. Everyone has heard horror stories about the chemical prep, so I opted for the natural route. He told me to eat like I had the flu for three to five days. Because I'm a bit of a worrier -- and because the reason I was seeing him was for sluggish bowels -- I extended my prep to at least seven days. I ate (drank) clear broth, Gatorade, ginger ale, and peppermint tea. I asked to watch the screen during my colonoscopy and I was delighted to see my colon walls were bubblegum pink! It was beautiful. My GI doc said I had a perfectly healthy colon and -- "good news!" -- my bowel problems were "only MS."

So, it appears the colon does a very good job of cleaning itself, even after decades of constipation. Fast forward to our prep for the fecal microbiota transplant. Normally the clinic has a patient do one colonic (colon hydrotherapy) session a month ahead. Because of my history with chronic constipation, the matron asked me to do two colonics plus 8 weeks of heavy duty magnesium therapy, beginning two months ahead.

 

Each of us received a final colonic immediately prior to receiving our first transplant of fecal microbiota. I must say the colonic they did in the clinic on our first transplant day felt much more effective. While one nurse managed the water input and output, another nurse massaged my abdomen. Not that I intend to do colonics in the future (see below), but I feel anyone needing a colonic should definitely look for a clinic that does this type of abdominal massage at the same time. 

All the slushing and sucking and waves of pressure certainly FELT like my colon was completely cleaned out during each colonic. Despite this "squeaky clean" feeling, you can rest assured that your colon is NOT cleaned out of its microbes! Your permanent microbial residents are embedded in your mucosal lining and not going anywhere. The bulk of your stool is their progeny, reflecting the full diversity of your microbiome. It's also a measure of your health – the more microbes as a percentage of your stool volume, the better you are at tending your microbial "garden."

I asked the clinic nurses if I should repeat my month long prep, including a colonic, prior to inserting each sample of microbes we took home. Their answer: definitely not! The nurses advised us never to have a colonic again. The clinic microbiologist shed further insight on what was behind their advice. As I mentioned previously, our gut microbes replicate anywhere from every 6-30 minutes, depending on species and conditions. The fastest ones (Glenn called them early replicators) get a head start on taking up all the space and nutrients after a colonic. This gives them an ever-so-important competitive edge over their slower-replicating microbe neighbours. The slower replicating ones are left behind and may never catch up or die off completely.

The net result? A potential shift in our microbiomes based only on how quickly the microbes can start dividing. Our guts slowly lose microbes that divide slowly and become occupied with progressively faster and faster (because they mutate to match your conditions) species. This is not exactly ideal and, over time, we lose microbial diversity. Because we just got ten transplants of healthy microbes in balance with each other, the last thing we want to do is start giving one type preferential treatment.

It's difficult to google these topics because so many places are trying to sell you products or services that they write convincing reviews with purported facts, but none of it backed up by actual research. Researchers find funding hard to come by that isn't underwritten by a commercial entity. That, I believe, is shifting as knowledge of the microbiome's significance to our health is accelerating.

Some articles, like this one, lay out the basic facts about our microbiome:

"The microorganisms living inside the gastrointestinal tract - also known as the gut flora - amount to as much as 4 pounds of biomass, with every individual having a unique mix of species. 

The microbiota is important in nutrition, immunity and effects on the brain and behavior. It is implicated in numerous diseases when the normal individual balance of microbes is disturbed"

I decided to look into potential damage to the microbiome from chemical cleansing -- such as the type performed before a colonoscopy. My hypothesis was any damage could be from the same phenomenon: early replicators get a jump start. This study found 3 out of 15 patients doing a colon cleanse prior to a colonoscopy had lasting changes to their gut microbiomes compared to 5 people who did not do a cleanse. However, the study found wide variations within microbial species and within each individual, with no consistent trend that resulted in statistical significance. A quick look at one of their charts shows you SOMETHING is going on (each colour equals one participant. Each participant had three samples tested, 1 month before (-1m), 1 week before (-1w), and 3 months post (+3m) colonoscopy. Control subjects were tested twice 3 months apart and are labelled A, B, C, H, and W. The closer the dots are for each colour, the more similar the test results of each person's microbiome.

Without seeing their data, I can only speculate that achieving statistical significance with a small study like this posed unique challenges. The researchers acknowledge some patients with ulcerative colitis (or on medications for UC or iron supplements) showed shifts in gut diversity in other small studies and their own. The control subjects (A, B, C, H, and W) appear to have more similar test results (shorter lines) than the numbered participants. Yet, because the net sum of these shifts zeroed out, the conclusion was there is no net change following chemical preparation for a colonoscopy.

It is possible the problem lies with the testing what is in the microbiome itself. We chose to pay for testing before we went for FMT through a crowd-sourced, open source citizen science project called the American Gut Project.

We are still waiting for our results from our pre-FMT testing. We will do our post-FMT tests at least three months after our last transplant. For me, that means waiting until I complete my four home transplants, which will likely be in July, so I will do a test in November.

If this subject of our microbiome interests you (which is obviously does because you're reading a blog about it!), it's well worth a few hours of your time to cruise through the website of the American Gut Project. You'll find the latest research, TED talks, blogs, and more. Go here: http://americangut.org/

However, sequencing our microbiome seems to be in, as one person called it, "cowboy country." A reporter sent kits to American Gut and uBiome, a commercial microbiome lab, and got dramatically different results -- from the same poop sample taken from the same piece of toilet paper!! Hmmm. If you're thinking about spending money to get YOUR microbiome sequenced, you might want to read her article about her problems with its accuracy. Her ultimate conclusion is we simply don't know, on the basis of these tests (and, speculatively, in gut research) what's in our poop. <sigh>

So, after three colonics, eight weeks of magnesium depth charges, and ten fecal transplants, I simply have to have faith that what I've done has made a difference to the make-up of my microbiome. I know it is making a difference to my clinical symptoms -- more on that next time!

~Sandra

(p.s. it may take you a minute to "get" this next cartoon, but it's worth it...!):

How to keep microbes from a donor's stool sample healthy ~ in a freezer and in our microbiomes!

We completed our 10 transplants and headed home. The final day was lengthy. We needed to collect all our home samples packed with medical ice in what looks like a cubic foot sized box. We were told not to open the box, which would expose the contents to air and lessen the time the microbes could be safely transported. 

Our time limit is 48 hours to get the samples to our home freezers. According to Glenn Taylor, clinic microbiologist, it's all about slowing the microbes. The clinic stores their samples at -80 degrees Celsius. Even at those temperatures, the microbes are s-l-o-w-l-y moving and trying to replicate. They can last quite a few months at these temperatures before there's a chance of mutation from the donor's microbiome. 

With this ever-so-slight chance of mutation from a live donor's microbiome, you might ask why does the clinic freeze the samples it uses for transplants done on-site at all? Could donors be lined up so there's essentially an assembly line of donor to scrubbing/screening microbes to recipient -- all occurring in real time with no time for mutation? Unfortunately, full screening cannot occur without freezing samples. Freezing for a minimum of three months means donors can be monitored and re-checked for emerging infectious or other disease. For example, if a sample screened clear, but the donor tested positive for hepatitis or HIV within three months, the sample would be destroyed. The three month donor test, then re-test ensures frozen samples are good to be used in clinic or sent home with a patient. 

Home freezers, however, are closer to -18 degrees Celsius than -80. Thus, as soon as we left the clinic with our sealed sample box, the clock was ticking. We had 48 hours to get them to our freezer and 6 months to use them. Despite outside temperature during our flight of -57 degrees or so, temperatures in the hold of an aircraft are approximately 7 degrees. So our 9-hour flight continued warming the microbes. Glenn Taylor said the rapid replicators (microbes that can reproduce in as few as 6 minutes) will be the first ones lost if they warm through transport, if our freezer isn't at least -18, or if more than six months passes. These rapid replicators, already moving slightly at -80 degrees, will speed up even more once in a home freezer. As soon as they manage to replicate, every million or so replications will result in a mutation. This mutation will adapt the fittest microbes to be ones that can live the best in a home freezer, not a human body. The more time passes and more replication cycles happen, the less our frozen transplants will resemble those taken from our live, healthy donors and the more they will look like microbes adapted to a frozen, plastic home. 

This whole dilemma of how to transfer live donor microbes into recipients while ensuring full safeguards of screening is also the issue with probiotics. Because these microbes are cultured outside a live body, many mutations will have occurred that make the microbes more and more removed from conditions in our gut. As I previously mentioned, probiotic microbes are transient, helping as they pass through our colon, but not taking up permanent residency. Given their mutated state (and maybe because of it??), that's probably just as well. 

If I use my two extra samples plus the two from Landon, I feel I can top up my clinic treatment quite nicely in the next 4-5 months. I can even get one or two additional from the ones we bought between the three of us to extend my post-treatment to six months. That's my plan. 

If I need antibiotics or get food poisoning, my plans will need to change. That will require at least two transplants in fairly close proximity after the assault on my microbiome ends. Fingers crossed I don't experience that type of setback anytime soon. I feel curiously protective of my new microbiome. I am going to treat my new microbes royally so I give them (and me) the best chance to succeed. 

We brought home several months' supply of Bimuno, a galacto-oligosaccharide resistant starch, which means it's only digestible by our microbiomes. Once I found out it dissolves tastelessly in tea, this has become part of my morning routine. Months ago, when I still had a severely dysbiotic gut, I tried the same thing with another prebiotic, inulin, but I ended up with very painful cramps and diarrhea after six weeks. I clearly didn't look up the potential side effects and heed the warning: "There is nothing inherently wrong with chicory root or Inulin. As a prebiotic, it has quite a few documented health benefits. However, most people can tolerate it only in small quantities, even if they tolerate other kinds of fiber quite well. The reason for this is that Inulin provides a veritable feast for certain types of gut flora. Many people don’t have a well balanced gut flora to begin with. In the age of antibiotics, dysbiosis is common. Feeding the wrong kind of bacteria can cause serious (no really, serious) amounts of gastro-intestinal upset, gas, explosive diarrhea and discomfort. This is obviously not good for nutrient absorption, either."

So far, I haven't experienced a similar response to Bimuno (well, almost). Each transplant has about 1/2 a sachet mixed into it in the incubator to give the microbes something to eat as soon as they are thawed. We were instructed to ingest a full sachet each morning. I experienced really bad bloating and gas on Day 2, which could have been the Bimuno or the war between my old and new microbes. The nurses had me cut back my Bimuno for a few days just in case, but I didn't experience any similar effects after I increased back to a full dose. I guess it was just a sign of the War of the Microbes!

Resistant starches are attracting a lot of research attention for their potential to cure disease, reduce inflammation, and maintain a healthy gut. In order to be also considered a prebiotic, a resistant starch must be able to survive passage through the stomach and small intestine, be able to be fermented by our gut microbes, and help our good bacteria reproduce and function. Learn more here and here.

~ Sandra

Goodbye clinic (and goodbye Amber)!

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 8^th 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 4^th 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...

Week 2 of my Fecal Microbiota Transplant ~ It's Groundhog Day!

**Sorry for the delay in posting these updates!**

After a weekend filled with friends, food, and plenty to drink, we headed back for Week 2. It seemed like we had to duplicate everything from Week 1 (minus the lavage), so we joked about being trapped in the movie Groundhog Day. We had late morning appointments every day so far. Monday, at last, we were scheduled to begin later at 3 pm. The nurse asked me to increase my Oxyklenz Sunday night so I greatly appreciated the extra time. The increased gut-blasting Oxyklenz meant I was up a few hours through the night. We had planned to head to Cambridge that morning; instead, Landon and Bill went trekking across farm fields while I caught up on missed sleep until almost 11 AM.

Monday's trip up the stairs went well -- much, MUCH better than Friday! I also held the transplant for 90 minutes -- well beyond the 20 minute minimum.

We spent a lot of time chatting with Glenn Taylor, the clinic microbiologist. He told us our gut microbes can reproduce in as few as 6 minutes. When they copy their DNA to make an exact duplicate of themselves, the process is called replication. However, each time they divide, there's a small chance they can mutate. Glenn puts the odds of a mutation at about 1 in 100 replications. Even though the chance they mutate is small, there are TRILLIONS of them dividing every 6+ minutes. Each mutation can result in a positive, negative, or neutral outcome.

Bacteria can also pick up genetic matter from passing probiotics or from each other in a process called conjugation (makes you aware of just how similar we are with other forms of life!).

DNA travels down a tubule that forms when bacteria come in close contact with each other. We can see this process through electron scanning microscopes and it's fascinating:

Replication does not increase the diversity or robustness of a species, whereas mutation and conjugation both have the potential to make a stronger species better adapted to survive (of course, these processes can result in less fit species, which simply do not survive). Thus, over time, mutations and conjugation result in stronger and stronger species. Over time, our gut becomes a "survival of the fittest" training ground through the Darwinian process of natural selection. Our microbes are tuned to survive and thrive in each of us -- our genes, our diets, our lifestyles, and (unfortunately) our exposure to drugs and toxins.

When we expose our gut microbes to drugs and toxins, the ones that survive become resistant to drugs and toxins.  Remember, natural selection is working to make the most robust of them survive, NOT the ones who help us in the most beneficial ways. Through my 275 courses of antibiotics in my life, I developed a microbiome that was VERY good at surviving assaults by antibiotics and maybe not-so-good at functions I need to survive, such as modulating my nervous and immune systems and deriving nutrition from my food. Although the biggest indicator of this is confirmation of antibiotic-resistant bacteria, you don't have to go anywhere near that far to severely impair your microbiome. I got confirmation twice that my bladder had developed resistant bacteria and was not responding to antibiotics. The first time, I got a bladder infection despite taking once daily, prophylactic antibiotics to stop UTIs. The second, my urologist said the inside walls of my bladder looked like "a teenager's pimply face" despite being on full strength antibiotics for 5 days. I can only assume the same natural selection was happening in my gut.

If we want the good guys to thrive, we have to protect them. Their beneficial attributes are a result of evolutionary symbiosis -- a mutual "I'll scratch your back if you'll scratch mine." This requires us living up to our part of the bargain and providing a nutritious, safe environment for microbes to thrive. In return, they modulate our immune and neurological systems by providing a gut neurovascular interface. Win-win! If we give them an environment that requires them to become defensive (toxins, drugs, poor nutrition), the microbes that survive will be focussed on beating the odds, not on maximizing the health of their host (us). It has taken me far too long to learn -- and live -- this lesson.

Many microbes die along the way, which is a global and growing problem. Humankind is losing gut diversity because of our toxic and drug filled lifetimes. We simply don't know how this decay in microbial diversity will affect future generations. We have driven many beneficial species of microbes to extinction, potentially throughout all human populations. A drive is underway to catalogue and preserve gut microbes from isolated human communities that host the last of these disappearing varieties. Wow. Here I am so focussed on my health and I learn that there's a much larger issue brewing. I knew about the risk of drug resistant bacteria, which already kill so many immunocompromised people. I didn't realize antibiotics and toxins also are eliminating species of microbes that, collectively, are vital to the health of our population and probably that of all species on earth.

Day7

New day, best trip up the stairs yet! Maybe it's because I wore my boots? My energy is so much better this week.

Today, Landon and I observed each other getting our transplants. We will take some transplant microbes home, so we need to know how to insert them. The nurses went through the procedure slowly and answered all our questions. Landon stayed with me through my 30 minute resting period, which made time pass quickly. I managed to make it until he was through his appointment, almost two hours later, before I lost some of my transplant! Could things be improving? Fingers crossed; butt clenched! Tomorrow, the nurses will supervise Landon doing my transplant. This must be true love!

Fecal Microbiota Transplant ~ Halfway to What?

We are on Day 5 -- the halfway point. What does halfway mean? Are my symptoms halfway to getting better (in which case I'm not going to see much difference at all)? Am I soon to reach some critical tipping point at which everything swings to the positive?

I am beginning to realize neither of these extremes is true. I am not going to come away empty handed, but nor am I likely to achieve a winning touchdown. At least not yet. According to the clinic directors, about one third of patients have a significant response by the third day. One third are "slow burners" who take weeks to see results. And about one third go away and never see improvement. This sounds all-too-familiar. We had the same proportions of responses within the CCSVI community. 

Anyone living with multiple sclerosis or any chronic disease knows the meaning of uncertainty. We LIVE it every moment.

I believe halfway in terms of my fecal microbiota transplant treatment means uncommitted, neutral, even ambiguous. A stalemate would imply that's as far as I will go -- game over. I think it's still to be determined if I will benefit from this treatment. My body is reacting to the intrusion of the daily transplants plus the physical challenges of the environment. It is (I am) slowly weakening. The stairs were even harder this morning. I fell going up the last two steps -- you know the ones -- where the railing runs out.

I slumped forward on the landing with my legs (again) awkwardly beneath me. Dr. Bill kindly got me a chair from the waiting room. Landon steadied me as I used the chair to climb to my feet and walk into the clinic for my fifth appointment. Dignity saved. Again. 

I got some goods news from my pre- and post treatment vital signs. My blood pressure has been low the past 4-5 months. The Wahls diet can definitely lower blood pressure and I had already cut my BP pill in half over a year ago -- three months after starting the diet. My doctor and I debated eliminating the need for medication altogether a couple weeks ago and decided to keep me on a minimal dose. Starting the FMT treatment caused my blood pressure to rise a lot. Today, for the first time in a week, my BP was back to its normal, low levels. I started the week over 50 points higher on the systolic measure. That's one positive note. Either I'm more comfortable in the clinic surroundings now or my gut is settling down. I'll take it either way. 

I told the nurses right from the start of today's session that I was doubtful I could hold my transplant in very long. I don't quite know how to describe the mixed feelings I get while trying my utmost to stop myself from losing it. The treatment room has a private adjacent washroom, but that almost makes it too easy. However, the nurses move my walker away when treating me and often leave it out of reach until my 30 minutes are up. So I can't really make a dash for the toilet if I wanted to. That leaves worry over the other option...losing it without making it to the washroom. Then there's the cost factor. Each transplant costs me almost one thousand dollars. I don't want to flush it before the microbes have a chance. I tried really hard not to let these thoughts preoccupy my mind while the clock ticked. In fact, each day I visualize positive feelings welcoming my new microbes to my body. I smile. I whisper "welcome!" I imagine them migrating to their new home and attaching to my colon walls. Peace.

The nurses came in and massaged me so the transplant (which is about 100 mL of liquid) moved all the way along the one metre length of my colon. They rolled me to my right side much sooner than usual and raised my feet slightly to reduce my urgency. It worked. I got through the 20 minute minimum and made it all the way to 30 minutes. Small victories!

We headed out straight away on a 3 hour road trip to join up with four of my lifelong friends and their partners for a relaxing weekend. Landon pulled into roadside services for just one pit stop for the three of us. That's pretty darn good considering we had trillions of new microbe hitchhikers on board!

I didn't come all this way to have NOTHING happen after my FMT Treatment!

**Warning** Frank talk about gut health ahead!

Day 3 - Different Day; Different Donor; Different Response

I was still feeling the effects from my chaotic gut from the day before when I woke up in the morning. Despite continuing to take the Oxyklenz, which softens the stool, and feeling like I had "lost" a lot of the liquid transplant material through multiple trips to the toilet, I was starting to feel constipated again. I decided to move things along a bit with a glycerin suppository. I figured if I removed that urgency then maybe I would hold this next transplant a little longer.

I remembered to drink very little – just enough to swallow the prebiotic powder – so my colon would be "thirsty" when it received today's implant. Landon make me a couple of eggs, then we headed to the clinic.

The clinic is on the first floor and has no elevator, so there are 19 stairs (they are moving to a new facility with accessible access this spring). For me, this is my first and best indication of my energy levels and ability. Landon holds my left arm as I use my right arm to firmly grip the railing and climb the stairs. It was harder today.

The nurse took me early, which was just as well because I felt bloated and had a stomach ache. As with every day, I go through a list of questions with her, such as "how would I describe my general wellbeing?" and "how would I describe my level of pain?" She takes my temperature, blood pressure, and oxygen saturation. I gave her a lower answer for my level of wellbeing today because of my energy levels and unsettled gut. Somehow, that felt like I was admitting I was losing.

The transplant went smoothly and I feel the nurses gave me a little extra time and TLC before ushering me back to the waiting room. I was definitely feeling more sluggish than I was 24 hours earlier. Landon was already in the treatment room when I came out, so I was a bit concerned about making it to a toilet, if needed. The clinic washroom in the waiting area is another physical challenge - up two narrow stairs with no railing. The combination of urgency + physical challenge = potential nightmare! Luckily, Landon came out and we chatted for quite a while before I decided I needed to go. We think it was about 2.5 hours since my transplant, so MUCH better than my first two days! We waited for Bill, then headed down the stairs.

Because my urgency was a lot better than the day before, we decided to head to a tapas bar. Their washroom, too, had two steps up! Landon had to help me twice to the toilet through our lunch. The first time, it was difficult for me to lift my feet onto each step while he steadied my balance. It was difficult again to navigate inside the washroom stall. Landon had to squeeze inside, shutting the door behind him, so he could help me. On my second trip to the toilet, it was still even more difficult to climb the steps. Landon had to balance me, but also lift me. However, as Landon waited for me so he could help me stand and get dressed again, a wave of renewed energy came over me. I easily stood on my own and got dressed. Landon helped me down the stairs, but it was obvious to me my energy fundamentally elevated.

Bill noticed it too. He said my voice was improved and I was engaged again. My energy stayed very good through the rest of the day and evening -- even while two my male roomies had naps!

I had a few rumbles after this transplant, but my gut settled and was calm. So very different from the day before!

One of the conversations I had with Annie, a member of the clinic staff, today concerned probiotics vs. FMT. She said probiotics, because they are cultured commercially and not inside a living being, lack the ability to effectively attach to the colon and colonize the gut. Most just float right on through. Annie said they are also subject to mutation because of their artificial duplication. She stressed they can still do good things for us but, like the literature I cited in my first blog, said they must be taken regularly because they don't stick around. Second, she recommended we rotate probiotic brands. I was taking VSL#3 regularly, so this was a timely reminder to rotate three or more different types.

The microbes received during an FMT, in contrast, are very much alive and eager to multiply. They went from donor to clinic, then frozen, then thawed and incubated to body temperature before insertion.  While being warmed to body temperature in the incubator, they are fed Bimuno, a microbe-specific prebiotic. From their perspective, they haven't had time to miss their old host yet. When they see a new opportunity (me!) to dig in and start doing their job, they are primed and ready. I guess that explains the "action" -- all the gurgles and sensations that happen in the hours after a new transplant.

Day 4 - Where did all my energy go?

Well, so much for having more energy! My leg spasms continued on and off through the night. By morning, I was dragging my feet quite badly. But – good news – something in my microbiome was working properly and produced results about 2:30 AM! Again, I had a mild stomach ache heading to the clinic for my late morning appointment.

The stairs posed an even greater challenge for me today. Even shifting myself on the treatment table to the different resting positions proved more difficult. My gut was gurgling almost right from the start after the transplant and I knew I wouldn't be able to hold it long. Sure enough, as soon as my time was up (again, the staff was very kind and gave me some extra time to rest), I lost some of the transplant. Back in the waiting room, I was happy to see Landon emerge in case I needed an urgent trip to the "two steps up" toilet!

I didn't have long to wait. Landon got me in there with relative ease (we were getting good at this, or so we thought). After I was done flushing a lot of my new microbes (I know millions, or even billions are left behind) I stood up with a great deal of Landon's help to go down the two steps and back into the waiting room. Now, imagine a British telephone booth.

That's about as much room as we have at the base of the steps before we have to go through a heavy door to the waiting room. So, Landon places my walker in that small square space and stands between the handlebars waiting to help me down the steps. In a perfect world, this works. Today, the world was not perfect. My right leg spasmed as I stepped down the steps and I collapsed forward onto my knees. My left knee was crushed underneath me and my right foot had at least three toes pinned at an awkward angle. There was no room to manoeuvre. Imagine Landon, me, and my walker pinned against the door and walls. Ouch...

Landon and I had to rapidly problem solve to get me sitting at the top of the two steps instead of forward on my legs, pinning him against the walker. Thankfully, my left knee and right toes escaped without lingering damage. From there, Landon was able to assist me to a stand and we joined Bill in the waiting room. Problem solved. Dignity saved. At least this happened on my way *out* of the washroom! This was just another close call in the life of someone with MS and her caring partner.

Even the stairs to leave the clinic were harder today. I'm consoling myself with chocolate rice thins. A rare aberration from my Wahls Paleo diet, but one I think I needed today. Interestingly, my upset stomach diminished greatly after eating the tapas yesterday and I had that sustained energy surge. I'm counting on some similar effect today after my chocolate treat!

Cheers everyone,

~Sandra