Wednesday, March 2, 2016

Fecal Microbiota Transplants - Day 1 & 2 Observations


Fecal Microbiota Transplant - Day 1

The clinic advised us to get to the area an hour in advance and I'm glad we did. Neither Landon or I slept well (both of us would say we didn't sleep at all) the night before, so the last thing we needed was worry from running late. We settled into the coffee shop next-door and I had a cup of peppermint tea. We were advised to arrive at the clinic thirsty so the colon is more eager to soak up liquid from the transplant. I hadn't had much to drink at all that morning, so I thought I would be in good shape.

Our first appointments consisted of an interview with the clinic doctor, who is conducting research, a 45-60 minute lavage (colonic), and a transplant of 60-70 mL fecal microbiota followed by approximately 30 mL saline solution to wash the transplant material further up the colon.

I was the lucky one to go first! I thought I would be well prepared given my 8 weeks taking Oxyklenz and two prior colonics, but I guess my colon had other thoughts. The two wonderful nurses worked with me for well over an hour to complete the lavage. It was the first time I experienced one person massaging my colon while the other ran the equipment. It made the lavage much more successful. Once I was squeaky clean, they quickly inserted a 16 inch catheter and injected the transplant directly into my colon. They followed that with a squirt of saline to get maximum distribution. Actually, what happened next was how they encouraged the new microbes to seek out their new home. They first had me lie on my right side for 10 minutes, then rolled me to my back for another 10. They finished off with 10 minutes with me sitting semi upright. They said if you could "hold" the liquid inside for a minimum of the first two positions (20 minutes), the microbes would have already settled in and started replicating. In other words, you wouldn't flush your investment! They gave me a very salty drink of electrolytes and I was done.

I thought I was doing pretty well because I held not only through the first three positions, but through my 20 minute interview and back out to the waiting room. I was there about seven minutes before I scrambled to the nearest toilet. The nurse assured me that the microbes would not be lost, which of course I knew to be the case. I needed quick access to a toilet several more times in the next hour or two.

I was totally outclassed by my two male roommates, who managed to hold for three and seven hours respectively.

Whether it was the lack of sleep from the night before or effects of the transplant, but I was very tired upon returning to our cottage. I headed to bed by 8 PM and slept until well after midnight. I was awake for about an hour, then slept again until 5:30 or 6 AM. I must have been preoccupied with thinking about my donor because I saw an unfamiliar man's face in my dreams. I realized my donor was simply these microbes temporary home, but I still felt indebted to him (or her) for taking such good care of them. Other than possibly that, I noticed no other effects after my first transplant.


- Day 2

My appointment was half an hour later today, so it felt like I had all the time in the world. I ate a bigger breakfast and drank a full pot of tea (non-caffeinated). I took my vitamins with about 4 ounces of water, then Landon brought me another 4 ounces containing Bimuno, the probiotic powder required by the clinic. Oops! So much for going thirsty!

Subsequent treatments are approximately 30 minutes. They quickly do the transplant and the saline solution, followed by the three resting maneuvers for 10 minutes each. I could tell even by the 30 minute mark that I wasn't going to last even an hour today. Sure enough, I think I lost some of the transplant in about 33 minutes. But, it's bacteria – a little goes a LONG way!

I do feel the second transplant started a turf war. I know have two new sets of microbes from two different individuals competing with my old microbes. I felt things rocking and rolling (think firecrackers in your butt!) for 8 or more hours, which is why the clinic recommends taking it easy after each transplant. Very early to bed again for me while Landon and Bill played cribbage.

Some observations that *may* be a response to FMT:
- My urine output is greater (Bill said the same for him)
- My MS numbness in my toes, which I feel has been slowly disappearing over the past few months, went away almost completely after Day 2 on my right foot and not quite as much on my left. Toes that have felt numb for two decades are amazingly near normal.
- Both my legs can spasm for hours a day. These spasms, which are a daily occurrence, have largely been absent for two days since I started FMT
- My left leg twitched and spasmed for a few minutes in a way it never has before.
- My heart pounded and raced for a minute when I was lying down. Other autonomic responses include momentary shivers and flushing of my face.
- I got bitten by a bed bug 😒

Tomorrow, I am going to be so thirsty before I go to the clinic, I will have chapped lips! I'm determined to retain my transplant longer.

Dr. Enid Taylor, the clinic naturopath, says they challenge their donors to eat as diverse a diet as possible. They had donors track how many foods they eat over one month and challenged them to get to 100. The two top scorers ate 104 and 97 foods and had a significant increase in microbe production. Interestingly, these benefits were still present six months later. This is the same guidance given by Dr. Terry Wahls, who challenges followers of her diet to reach 200 different foods in a year. The science on this is in its infancy. These researchers, for example, found a diet of a certain type of fish with multiple food sources to be detrimental to the diversity of the microbiome. However, I don't believe these findings will transfer to humans, most of whom ate a mixed, omnivore diet thousands of years ago as hunters and gatherers.

~  Sandra


7 comments:

  1. Egad. Very Excellent about the toes and spasms, (not the best about the bedbug).... This is all so fascinating!!!

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  2. Living vicariously through you. Must say I dont know how good my 'holding' pattern would be and my fear would be missing the toilet altogether. Prayers for continued success.

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  3. Very cool! I hope you see more and sustained improvements and that you share them with us as they happen.

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  4. Thank you again, this makes a difference hearing from you and getting more understanding.
    Looking forward, clenched checks though! :)

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  5. I do hope this will work for you, you deserve a time off MS. I think we all do. I just posted an article about this procedure on CCSVI Vancouver and now will add your testimony to it. I am very happy for you, keep your "cheeks" together!!
    Jenna.
    BTW Have a very Happy Birthday tomorrow!!!

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    1. Happy Birthday Sandra! Sounds like you are getting quite the present. From what I read in your observations there seem to be some positive results; how exciting!

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