Thursday, February 25, 2016
Can microbes from someone else's poop help me?
Well...I'm about to find out.
On Monday, February 29, I will receive the first of 10 transplants of microbes from a healthy, screened donor. The next day, and for the next 9 days, I will receive another healthy, screened transplant, each a different donor. So, why am I doing this? Let me begin by telling you a little bit about myself and what I understand to be the science behind this promising field of research and discovery.
I'm a 56 (almost 57) year-old female, with a lifelong history of chronic gastrointestinal and bladder issues. Long before I knew I had multiple sclerosis, I knew I had problems with chronic constipation and infections, particularly urinary tract infections. Fast forward to my actual MS diagnosis in 1991, my neurologist traced the first symptoms of my MS to my bladder problems when I was 19 or 20 years old. When I finally got the courage to go see a gastroenterologist in 2001 about my constipation (not a subject I could easily talk about, even with a doctor!), he performed a colonoscopy and told me "Good news! It's only MS."
Unfortunately, this diagnosis of "irritable bowel syndrome from MS" did not bring relief. Between my frequent UTIs and bowel issues, I tried every folk and holistic remedy on the market. On top of that, I took antibiotics for a UTI numerous times a year. Eventually, I succumbed and also started taking prescription drugs to treat my bowel in 2005 when spasms started accompanying my ever-present constipation. I never went anywhere without my "blue pills" – an antispasmodic. Between them and massive doses of magnesium, I could manage. But there were days! I remember spending many hours trapped in bathrooms unable to get relief. It didn't matter if I was home, in a hotel, or in a restaurant – each of which happened many, many times.
Back to those darn antibiotics. I had the good fortune to sit with Dr. Terry Wahls through a dinner at the Canadian Neurovascular Health Society conference last October. She was interested in my progress following her adapted Paleo diet. When I recounted a 14 month long battle with bouts of physical fatigue interspersed with improved energy and function, she gently inquired whether I had a history of using antibiotics. I told her I had and, in the following weeks, I completed an extensive tally of the number of antibiotic prescriptions I had taken in my life. Tonsillitis as an infant and child/teenager, strep throat, sinus and other infections, post-op infections (after every type of surgery), and numerous bladder infections all quickly added up over my 56 years. Some of these prescriptions were for multiple months as doctors tried to prophylactically treat my bladder infections. The number of prescriptions for antibiotics over my lifetime, to date, is an astonishing 275.
Each prescription was accompanied by lab tests confirming its necessity. I would get very, very ill with a bladder infection to the extent that I could not move my arms or legs or even sit up. Within two days of taking antibiotics, I noted a marked improvement in neurological symptoms and physical abilities. My walking was BETTER than before I started taking antibiotics. However, by the fifth or sixth day of a seven-day course of pills, my MS symptoms regressed to my "normal." And then the cycle would repeat, sometimes twice a month.
Through this, I had an intuitive sense that I was either battling some hidden infectious agent or certainly an imbalance in my gut. I was lucky enough to be part of a study of nutrition and MS in 2013 conducted by Dr. William Shaw and Dr. Bill Code that showed that I had gut bacteria that weren't exactly welcome visitors. Although I didn't have C. difficile, I had 6-7 strains of bacteria that were not normally found in a human microbiome. Their effects on my health were unknown.
My husband and I continue to follow the diet recommendations of Dr. Terry Wahls. Despite eating the healthiest of foods, I don't feel I get the full benefit in terms of nutrition and improvements to my gut. In fact, I would describe my gut as a war zone. This history prompted us to seek fecal microbiota transplant (FMT) to reboot our systems and introduce a much wider diversity of microbes to their new homes. At the minimum, I expect it to resolve my lifelong battle with chronic constipation.
Yes, Landon is doing FMT beginning Monday too! As a couple, we share many common characteristics in our microbiomes (especially since we have a pet). Landon did not want to continue to harbour any of the more deleterious bacteria he picked up from me in case they found their way back or even affected his health.
One more person is coming with us to receive FMT: Dr. Bill Code. Like so many of us with a chronic illness, Bill is experiencing increased sensitivities to a variety of foods and other symptoms that may respond well to this treatment. I am thrilled to have him along as a good friend and physician!
My hope with this blog is to introduce the conversation to a wider audience of people who may be facing similar challenges. This may seem like something a person would keep private – my mom, if she was still alive, would agree! However, I feel strongly that sharing this experience will help me come to terms with the changes that may happen over the next months and years as I adapt to my new microbes (and they adapt to me!). I hope this may help others with a similar medical history or, like me, who have a feeling that something isn't quite right in their gut.
Here are some resources that helped me explore FMT as an option for my gut dysbiosis (a gut whose microbiota is severely affected and dysfunctional as a result of inflammation or antibiotics). Many of them mention taking pre- and probiotics – both of which I tried for many years and still ingest. However, for me, that just wasn't going to be enough to reverse the damage from a lifetime of antibiotics.
Many media stories have been done on FMT. Here's a link to broadcasts done by the Australian network ABC. I recommend beginning with their two-part series "Gut Reaction Part 1" and "Gut Reaction Part 2."
Australia is also home to one of the leading researchers in this field, Dr. Thomas J Borody. Here's a paper from 2014. In 2011, Dr. Borody studied the improvements in three MS patients following treatment with FMT for chronic constipation. This paper is the closest description to my health issues, with bowel, bladder, and mobility the dominant symptoms. His summary:
"An infectious cause of multiple sclerosis (MS) has been speculated, though the potential for gastrointestinal pathogens to exert neurological effects remotely (as seen with many Clostridium species) has not been considered likely. In 2011, Borody et al. reported three wheelchair-bound patients with MS treated with FMT for constipation. Bowel symptoms resolved following FMT; however, in all cases, there was also a progressive and dramatic improvement in neurological symptoms, with all three patients regaining the ability to walk unassisted. Two of the patients with prior indwelling urinary catheters experienced restoration of urinary function. In one patient of the three, follow-up MRI 15 years after FMT showed a halting of disease progression and ‘no evidence of active disease’."
A more detailed excerpt from this paper can be found here.
Interest in the microbiome is expanding rapidly, as a quick Google search will reveal. Here's the link to Google Trends.
You can see the current PubMed results for the search terms "gut" and "multiple sclerosis" by following this link.
I also edit a weekly neurovascular health newsletter that often includes timely articles. You can find the current issue here.
Because the three of us are also volunteer board members with the Canadian Neurovascular Health Society, we want to share our experiences with interested members of the public and researchers. We are in touch with several researchers and will continue to monitor and document our results. I also intend to share our experiences in this blog, beginning with regular updates as we receive our transplants starting next week. You can also comment and ask us questions! Don't be afraid to "talk poop" – we are ready for it!
I'm sure one of the questions you'll have is about where we are going and the cost. We are headed to the Taymount Clinic in Hitchen (just north of London), UK. We are paying just under $10,000 each, plus cost of travel and accommodations. It's a heavy hit to our bank accounts, for sure, but we feel the potential for improvement to our health is worth it.