Fecal Microbiota Transplant! Urgently trying to raise funds!

[Lulu]

Hi all, I was diagnosed with MDS in 2011, having had several years of feeling progressively more lousy and thinking I had ME. I have also had severe gut problems for 20+ years. Official diagnosis is fibrotic RAEB1, normal cytogenetics.

Initially my hg responded well to vitamin K supplementation (there is a whole thread on this somewhere and the original clinical trial is here http://www.nature.com/leu/journal/v1.../2401790a.html) but overall my counts are dropping and I recently needed a transfusion - first in 4 years.

I suspect that some subtypes of MDS originate in the gut, driven by dysfunctions in the microbiome and malabsorption of (especially) fat-soluble vitamins. Supplementing helps but doesn't address the root cause, and I believe there are probably nutrients not known to science which are being knocked out by bowel dysfunction, and interactions with microbiota that are as yet unknown.

So I figured that if I can fix the gut problems maybe my immune system will stop going crazy and the bone marrow might fix itself. I want to try a Fecal Microbiota Transplant, which has a very good record for curing gut problems and many patients with autoimmune disorders are going into remission.

Thank you for reading x

[bxpansive]

For more info:

http://thefecaltransplantfoundation....al-transplant/

[bailie]

What do your doctors say about this? What chemotherapy are you now taking?

[Lulu]

Hi Baillie

My doctors seem quite interested, however it is not their area of expertise and I can't get NHS funding for FMT as it is only done for C-diff. I'm going to go for it anyhow, have had some very kind donations and the rest will go on a credit card.

So far I have not had any conventional drugs. Only because I have been *very* fortunate in that I responded so well to menatetrenone, going from being very ill in 2011 to transfusion-independent for 3-4 years. Main problem now is that I have developed transfusion antibodies, which I am told is rare in someone who has not had many transfusions. Test results below..



If the FMT does nothing, or my hg goes down before it takes effect, the next step would be to try EPO. They haven't suggested chemo as yet. I am curious about Rituximab however, particularly as I have this transfusion antibody issue, and wonder if the underlying issue is some autoimmune problem. I don't think Rituximab is licenced in the UK for MDS though.

[bailie]

What were the results of your last bone marrow biopsy?

[Lulu]

BMB in 2012 said Fibrotic Myelodysplasia (Refractory Anaemia with Excess blasts) Blasts 5%, cytogenetics normal.

Am still waiting for the results of one I had recently.

I've now got a date booked for the FMT... haven't declined any conventional treatment in favour of it, am just trying this route before making any decisions about anything else. Will post the results whatever happens!

[Marlene]

Good luck with FMT. Do you think that one do the trick or will you need one or two more? I've read where some need additional FMT's. I will be following your post for the results. Healing can take a while once you correct an imbalance. I believe the body prioritizes what it will fix first.

Wishing you the best of luck with this and hope it improves your health.

[Lulu]

Thank you Marlene, I will certainly post the results! The procedure involves 10 FMTs in clinic (over 2 weeks), and they may recommend continuing with treatments at home afterwards.
From what I have read, some people's gut problems respond instantly, but others take longer, and there is the risk it won't do anything at all.

Either way I know I will have to be patient and give it several months to tell if it has done anything for my bone marrow. If it is a spectacular failure I will be very disappointed, but at least I'll know I have tried.

FMT is not available in the US but they have just opened a clinic in the Bahamas

http://taymount.com/all/pioneering-u...-north-america

........
* I have just found these couple of articles which may be of interest. This one theorising a "Brain–Gut–Bone Marrow Axis"
http://circres.ahajournals.org/conte.../1327.abstract
The researcher is Monica Santisteban https://www.researchgate.net/profile/Monica_Santisteban

and this one re microbiota regulating the immune system via bone marrow. Chapter 3 is particularly interesting.
http://thesis.library.caltech.edu/82...i%20thesis.pdf

I can't pretend I understand it all though, and it does refer to germ-free mice, not humans!

[Marlene]

Thanks for the links. It's a lot to absorb and understand. Most is lost on me but I do feel correcting gut imbalances is an important aspect of healing. It's easy to lose sight of the big picture because we get so focused on blood production and CBCs. Thinking that correcting gut dysbiosis could help fix other problems was pretty out there and a difficult concept to grasp. But when you look at all the work done back 10 -20 years ago in the alternative medicine world, there was always a significant focus on gut health. And there was a tremendous amount of work done on gut health as it relates to autism. H.pylori has been implicated in some MDS cases. So there's some strong evidence that by restoring the your micro biome you can greatly improve your health and even reverse some diseases.

Thanks again.

[Bananamoore]

Hi Lulu,

My mom who has MDS 5q- is exploring the option of doing a fecal transplant, I don't think that a gut imbalance is the root cause of her particular problems, but every drop can contribute to overall health no matter what treatment option we end up pursuing. I am interested if you went ahead with yours and how you are doing. Wishing you success!

[Lulu]

Hi folks, sorry haven't been on here for a while!

FMT made a dramatic difference to my gut, went from having chronic diarrhoea to normal, and (bizarrely) within two days my runny nose which I had had all my life and thought was normal, cleared up. Unfortunately the dramatic improvement did wear off within a few weeks, although it is better than it was. Possibly if I could afford to have a week of FMT every month for a couple of years the gut problems would be curable, but it is ridiculously expensive if you go to a clinic.

This time last year my Hg dropped suddenly, from 10ish to 7.9 at its worst and white count/neuts were on the borderline of needing prophylactic antibiotics, and docs started talking about BMT. Had a transfusion and they found that I have multiple antibodies, which has complicated things massively. Since the FMT (early July) counts have been stable though low, most of last year Hg hovered around 8.5, and last week was 9.2 and white cells 4.5 (highest for ages). Feel OK-ish at the mo.

I am not sure how much of this is down to the FMT or down to other things I have been trying. Last August I had an abnormal test for something called Zinc Protoporphyrin which is generated when the body uses zinc rather than iron to make haemoglobin. Docs thought this was due to iron deficiency (which I thought odd as my ferritin is high and have macro rather than micro-cytic anaemia) and prescribed iron tablets, but I persuaded them to test for zinc and copper also. Copper was at the high end of normal, and Zinc was low (9 - it should be over 11)

Started taking 30mg zinc (balanced with copper) and within a week felt better and gut felt more settled. Interestingly, Zinc deficiency can be both a cause and effect of chronic diarrhoea. It did not seem to have any effect on my blood counts (unless it has taken this long to improve!)

I have also persuaded docs to test for various viruses including Parvo and EBV, am waiting for results of that.