Hi, my name is Catherine and I have a rare life-threatening bone marrow condition called Myelodysplastic Syndrome (aka MDS) and am looking for help to fund an experimental treatment, FMT, aimed at improving gut function.
I became ill around 2011, with months of fatigue, dizziness, spontaneous bruising and frequent infections. I was found to be severely anaemic and eventually diagnosed with "idiopathic" (ie no known cause) MDS. Blood transfusions saved my life, and I cannot praise our wonderful NHS staff enough.
Until then my health had been generally good, with one exception: chronic gut problems, diagnosed by a gastroenterologist as Bile Acid Malabsorption. I will spare the embarassing details, suffice to say it has ruled my life for 20+ years - further info here if needed: http://www.uhcw.nhs.uk/bam/what-is-bam
I am one of a lucky subgroup of MDS patients whose haemoglobin (red cell count) initially responded well to treatment with a supplement called Menatetrenone, a form of vitamin K which underwent clinical trials in Japan. The original research paper is here:
http://www.nature.com/leu/journal/v14/n6/full/2401790a.html
Having trained in nutrition I knew that this nutrient can be knocked out by bowel dysfunction, so suspected there was a link between the BAM and the MDS. This treatment improved the anaemia and kept me out of the danger zone for the last 4 years, however I have always known that it was not addressing the root cause of the problem, and there were obviously other factors involved.
There are a number of scientific papers which note an association between MDS and gut issues, and recent research into Bile Acid Malabsorption suggests it may be caused by disturbances in gut bacteria (aka the microbiome): http://www.hindawi.com/journals/grp/2015/398585
So.. could restoring the microbiome to a healthy state cure the BAM and allow my immune system and bone marrow to start functioning normally? In the absence of any other answers, I would like to put this theory to the test. But I need financial help to do this!
There is a new treatment available, which has had a very good success rate with a range of gut disorders from C-Diff to Crohns and IBS. The procedure is known as Fecal Microbiota Transplant (FMT), and involves implanting gut bacteria from a carefully screened healthy donor, directly into the bowel of the sick person. Yes it sounds a bit "ick", but actually the procedure is very safe and nowadays just involves implanting the friendly bugs, nothing else!
There is growing evidence that manipulating this microbiota can
improve or even cure various inflammatory diseases: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325
http://www.voanews.com/content/inflammatory-bowel-disease-cured-with-fecal-transplant/2609711.html
http://genomemag.com/change-your-microbiome-change-yourself/#.VzH6YaMrLeR
The problem is that FMT is currently only available privately, at the Taymount Clinic which is the other side of the country to me. I am therefore seeking £10,000 funding to cover the cost of the two-week initial treatment, travel expenses, accommodation/food, and follow up home treatments (these are recommended for up to two years and are £240 each) http://taymount.com/faq
The human microbiome is a "hot topic" in medical research right now, and I have no doubt will one day be a standard treatment, however I do not have time to wait.
Despite my best efforts, the gut problems are worsening, and earlier this year following an infection which required antibiotics, my blood counts dropped to the point I needed transfusions again.
Unfortunately I have now developed autoimmune antibodies to most donated blood. This means my immune system destroys the donor blood cells: a potentially fatal complication. It is very rare for someone who has had so few transfusions, and may be another factor in the underlying condition. I am what is referred to here as a hyper-responder and it limits conventional treatment options somewhat.
It feels like I am in a race against time to find a solution to this horrible disease.
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If I can get funding for this treatment, I will document the process and outcome in detail. I would not be doing this if I didn't think there was a good chance of success, but whatever the outcome, we will be helping others who might be considering the treatment, make a more informed decision. If it is successful, I will be campaigning to get this recognized and available on the NHS...which would make a world of difference to those of us who cannot afford private treatment.
Thank you for reading, and for any donations, however small. Your generosity is really appreciated.
To pre-empt some questions!
* Aren't you just clutching at straws?
This is a matter of perception. Some may call it clutching at straws - I call it leaving no stone unturned. I do not believe that serious illness "just happens", and idiopathic merely means that the cause has not yet been found. I will never stop looking!
* But there is no evidence!
Absence of evidence means merely that. As far as I know, no MDS patient has ever tried FMT, so until someone does, there will never be any evidence one way or another.
If this works it will prove a clear link between the microbiome and bone marrow function, and hopefully encourage further research, potentially saving many lives. How exciting would that be!
* So you think you have found a magic cure?
Nothing that simplistic. I have just made what I see as a logical association between two issues I have, found scientific research that backs up the link, and evidence that this procedure might help one of them.
There are many subtypes of MDS with different causes and patterns of symptoms, and my case may be very different to others. And of course I may be completely wrong about the cause of my illness and/or the efficacy of FMT for Bile Acid Malabsorption - I am not a doctor and this is an experimental treatment!
* But it sounds like quackery!
Far from it. FMT is undergoing clinical trials in Universities all over the world, and the microbiome is one of the fastest growing areas of medical research. http://lmgtfy.com/?q=fecal+transplant+evidence
* What about conventional treatment? Isn't there a cure?
If there was a drug to cure MDS I would take it! Unfortunately all current treatments have their downsides. To quote one friend, MDS is a "damned if you do, damned if you don't disease". For instance the lifesaving blood transfusions that many of us rely on result in a build-up of iron in the body, which can cause heart attacks and liver failure. Drugs can reduce the iron, but can damage the kidneys and cause deafness. A bone marrow transplant using cells from an unrelated donor is the only potentially curative option, however this is a hugely risky procedure with a high rate of relapse. It is not a decision to be taken lightly, and risks currently outweigh the benefits. I am not anti conventional treatment, and FMT can be done alongside, so it is not an either/or situation.
* What if it doesn't work?
Obviously I will be very disappointed, but at least I will be able to
move on and better assess my next options. And any data is useful for
researchers. Many people with other chronic conditons have reported
good outcomes, so even if it does not improve my blood counts, I am
cautiously optimistic it could help my gut. There is even evidence
that improving the diversity of microbiota may reduce GVHD, one of the
most dangerous side effects of a bone marrow transplant, should I ever
need to go down that route.
http://www.hindawi.com/journals/jir/2015/145859
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133489
Please note: if you are considering trying any alternative treatments it is essential to discuss this with your doctor first, as some supplements may worsen your condition or react with your medication. And if you have any new or undiagnosed gut symptoms, you need to get them checked out immediately - do not self-diagnose!
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