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Ubiome - microbiome testing

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Ulcerative Colitis
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Posted 9/14/2017 6:01 AM (GMT 0)
I am trying to understand if a special diet plus the triple antibiotic cocktail can help my son to take control of UC and get into remission. So far it looks like the biologics are not working well for him. Remicade failed in three months and I am suspicious about Entyvio as well. Running out of options and feel very anxious about it.

As many of us here I am hopeful that microbiome studies will give us some effective treatments one day: like effective FMT, targeted antibiotics, diets, etc.

I wonder if anybody participated in Ubiome study... what can we get out of it?

We did Prometheus test few weeks ago and the results were "Pattern now consistent with IBD". Our GI still said that she primarily ordered the test to exclude possibility of Crohn's and that results are consistent with UC...confusing...

will Ubiome give some data that I can work with (help me to target the disease a bit better)
Posted 9/14/2017 1:58 PM (GMT 0)
I did the Ubiome study back in June but still haven't got results from them. Just heard back after inquiring and they are behind in processing stuff. I am doing it just out of curiousity. Not sure how helpful it will be, maybe it will show how far off or close to "normal" your gut is?
Posted 9/14/2017 2:06 PM (GMT 0)
just curious there dad - are you or any other family members a viable candidate for FMT donorship ?
Posted 9/14/2017 2:09 PM (GMT 0)
I thought about doing this myself, but they also wanted you to sign up for some "PicnicHealth" thing that would automatically collect all of your medical record data from GI's and other doctors, to supposedly "have it all in one place".

My b#llcrap detector went off......could have been a false alarm, but I decided to heed it anyway.

The other thing was during my research on micro-biome analysis I read about one woman who sent in a sample to two different places (same sample divided) and the reports she got were insanely different from the two places.

This tells me that they just aren't anywhere even remotely close to having a good understanding of what they are even looking at (or for) so I have decided to let them figure it out for a few more years before I jump in.

I don't know much about that triple cocktail but there is a group on Facebook where that is the sole source of conversation called "Crohn's MAP support group". Many of them are using that therapy now, so they'd be a great resource to gather more info.

Here's the group link :
https://www.facebook.com/groups/425949470944340/

Good luck, I hope your son has a big turn for the better.....it really is a frustrating condition.
Posted 9/14/2017 3:08 PM (GMT 0)
I did the testing, and gave the release of my data for research. I filled out some medical questionnaires. Not sure if they now have a more formal study.

I found out which microbes were under and over expressed. I would be much better off info-wise if I had a microbe profile from before I got UC. I need to know what is my normal.

There is some literature out there on the usual under/over expression seen with UC, and also some literature on how different food groups and food additives can manipulate the proportion of different microbes. - This is far from clear advice. It is not part of clinical practice, so mainstream GI are not yet a good partner for this kind of personal experimentation. A few naturopaths and/or nutritionists would be suitable scientific partners, but good luck finding them. Many naturopaths (IMO) are pushing general pop theories/fads and do not have a lot of disease-specific insights. Others are just plain trying to sell books and expensive lab tests.

Severalrecent articles give some hints, but they did not all have compelling statistical evidence:

/link-springer-com.lib-e2.lib.ttu.edu/article/10.1007%2Fs10620-017-4620-0 said...
Legumes and potato were inversely associated with disease relapse (p value for trend 0.023) with patients in the highest quartile for legume and potato consumption carrying a 79% lower risk of active disease (adjusted OR 0.21, 95% CI 0.57–0.81). A positive association emerged between meat intake and disease relapse, the highest quartile for meat consumption coinciding with a higher risk of active disease (OR 3.61, 95% CI 1.15–11.38), though this was not significant in the adjusted analysis. No statistically significant associations were found between disease relapse and the intake of vegetables, cereals, dairy products, or fish.


/www.wjgnet.com/1007-9327/full/v23/i12/2124.htm said...
Dietary constituents have been shown to affect the immune response and the inflammatory status, in great part mediated through the modulation of the microbiota. Environmental compounds, including nutrients, can induce alterations in the epigenome interface, resulting in long lasting phenotypic or even tissue structure and function modifications. Unravelling the complex molecular basis of the epigenetic, genetic and environmental interactions underlying IBD pathogenesis will have implications for the development of novel therapies.



journal.frontiersin.org/article/10.3389/fimmu.2017.00838/full said...
nflammatory bowel diseases (IBD) and asthma are chronic mucosal inflammatory conditions of unknown etiology with increasing prevalence worldwide. These conditions have a multifactorial etiology including genetic factors, environmental factors, and dysregulated immune responses. Their increased prevalence cannot solely be attributed to genetic considerations implying that other factors such as diet can be a major contributor. Recent reports indicate that the gut microbiota and modifications thereof, due to a consumption of a diet high in saturated fats and low in fibers, can trigger factors regulating the development and/or progression of both conditions.



good luck

Post Edited (DBwithUC) : 9/14/2017 9:13:08 AM (GMT-6)

Posted 9/14/2017 3:12 PM (GMT 0)
and an interesting note about LOW-FOODMAP controlling IBS symptoms for IBD patients in remission.

/www.wjgnet.com/1007-9327/full/v23/i18/3356.htm said...
In a prospective study, a low-FODMAP diet reduced IBS-like symptoms and increased quality of life in patients with IBD in remission.

Posted 9/14/2017 3:45 PM (GMT 0)
The ubiome shows what you have, and what is considered to be normal (you might be high in some things, low in others, and have good/bad concentrations of things, have less diversity than the norm). The ubiome data returned to you is up to you to interpret and I don't believe most doctors would have a clue either. They give you a breakdown of bacterium by family. It isn't really specific. For example, we're in the family Hominidae along with all of the great apes (are ya dealing with a chimp or a human based on report data). So you cannot take the ubiome report and know which strains of probiotic you should take, as an example. Or it's not going to tell you how to change your diet to adjust any imbalances found. I have yet to find good resources to help with what ya do with the data.

The big reason I haven't done ubiome, is I don't see how it could help me. I'd need to know a lot more to interpret. Different outfits do give different results. I've read articles on it.

You can rerun the test from the same outfit after a change. Get the now baseline, change something, and retest in a series of months.
Posted 9/14/2017 4:18 PM (GMT 0)
I am still new to this forum. Do not know how to respond to individual comments. Thank you all for your contributions.

I am here for my son. 14 years old, dealing with UC for 1 year now. He has not been in remission yet. We had 2 months symptom free on prednisone, and then were 6 weeks symptoms free when tapering of it with some other medicines. The moment we went from 3 mg to 2 mg, symptoms start getting back. We are off prednisone now, but symptoms are getting a bit worse every week. No diarrhea, no cramping, but 5-7 bms with some bloody mucus and no improvement. Our current GI doctor recommends adding 6 mp to the list of what we have now: Entyvio, balsalazide and uceris. I am trying to see if we can push him into remission without that much of medicines. Plus, of course I worry about so many medicines and frankly I am afraid of what is next if 6 mp would not help. Remicade stopped working after 3 month.

Do we have good FMT providers for pediatric UC in the US? we are in California. I kind of have a verbal agreement with the children Hospital in LA that they will include my son in FMT trial that they might start in few months. We are also talking to a new GI doctor. He recommended the antibiotic cocktail and claims that they have good results with it. So, my options are: to try the antibiotics now; wait and hope that the symptoms will not get much worse and wait until 6 MP starts working and this will take time; go back to prednisone to buy time. I am leaning towards the first option, but trying to make it more educated by getting some info about the new UC diet (currently tested in Israel and Philadelphia). but my son is not eligible for their trials as he used biologics and they do not share info about the diet.

So, may be the choice is to try the antibiotics cocktail now or prednisone to stop the symptoms... a better one would be to take it under control with 5-ASA, etc, but doctors do not think that increasing the dosage would help. Enemas worked for us for some time, but probably do not anymore.

Do not want to make a decision being in pain, but doctors do not really project that much confidence. I wish I had full (or almost full) trust in our doctor... but I do not now.
Posted 9/14/2017 4:26 PM (GMT 0)
Sorry. There are no absolute yes or no answers with UC, rather it's always full of contradictions. I sum it up with: what works well for one, might do nothing for another, and might make another's symptoms a whole lot worse. All you can do is try what you believe to be the best, next step. In the end it's a leap of faith and all trial and error. No easy button.
Posted 9/14/2017 4:35 PM (GMT 0)

DBwithUC said...
I found out which microbes were under and over expressed.

See, if I could be sure the results were accurate, I might just do it. But the one lady who sent samples to two separate testing places (same sample) received two very different reports.......this makes me wonder about how the microbes survive transport. And do they CHANGE during transport? and even the variance within the exact same sample..... how accurate is the entire affair?
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