RDS, FL Horrible experience with RDS Infusions clinic in Florida (2017)

RDS infusions, Florida

Michael Harrop

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They seemed very unprofessional. They asked for medical documents for the doctor to review prior/during the consult (which was prepaid cash) and the doctor didn't bother to read them, despite me clearly stating that it would be important to do so since I do not function well in real time and rely on typing.

Their donors are flighty. The doctor said to ask the donor about various details, and when I did that the donor seemed to freak out and refuse to ship at all without even an explanation. I've had many people leave me to die but never did I expect it from a clinic.

This is the full email I sent to them originally when I first started looking into getting treatment from them.

Sharing it here because I think people may find it helpful. The response to the email was that I would need to pay for a consult with the doctor to have the questions answered. But most of the questions were not addressed during the consult, and for some of them I was told to ask the donor.

I live on social security disability so the procedure isn't affordable for me right now, but I've been following the research very closely every day for the past few years and I was just curious about some of the procedure/donor details.

I created this wiki https://humanmicrobiome.info/ and the "FMT" section has details of common flaws. I recently read this great article about your clinic https://www.buzzfeed.com/nidhisubbaraman/inside-tampa-fecal-transplant-clinic and it seems to me like there's some room for improvement in the FMTs being done there. From a bit of the patient feedback I saw it seems like the results being gotten are fairly minimal.

The article mentions the poop being blended. This likely kills off a lot of anaerobes. Beyond some of the links in the wiki on this, I contacted OpenBiome about this before and they ran this study which confirmed it: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0170922

You could probably also reduce some air exposure by using ziplock bags instead of tupperware containers. The bags can be flattened/rolled before being zipped to remove much more air than with a hard plastic container.

Your website says all procedures are done via colon-only. It seems likely that skipping the entire small intestine would be problematic for conditions which are primarily upper-GI-dysbiosis.

This study showed fresh > frozen > freeze dry: http://onlinelibrary.wiley.com/doi/10.1111/apt.13969/abstract

And they flash froze, while you guys are slow freezing. I imagine the slow freezing being done there is even worse. Also, that study was only for c.diff, which seems to be one of the easier things to treat. For harder conditions it's likely that flaws will be magnified.

I know in the clinic/research setting it can be hard to overcome the listed flaws, I'm just curious if it's been attempted, and what the results were. In my experience it seems like if the donor & procedure details are low quality the results are minimal and temporary.

Have you guys experimented with pooling the stools from all the donors? There's a link in the wiki showing it's more effective.

Have you noticed any differences in efficacy between your donors? From that picture of the male donor vs the description of the other young female donor, it seems like the latter would be more effective. The fact that she says in the article that she can tell the donors apart from their stool also strongly suggests that they are not equal in quality.

From my experiences, and feedback from others, it seems like stool comp & consistency is likely the #1 factor. It seems stools must be very firm, uniform, consistent, fully digested, and possibly dark. Basically only type 3 on the bristol stool scale. Effective donors have identical looking stool in my experience, and low quality donors are identifiable via their stool appearance, which is heterogeneous.

The "Probiotic Wash/Infusion" listed on the website turns me off because from what I've seen probiotic colonics are fairly useless, and that's a crazy high price. You can get a colonic done with probiotics for ~$60. It sounds like you may just be using the word "probiotic" differently, but I think that needs to be clarified on the site.

The discrepancy between your website vs the article is significant enough that it lead me to (probably erroneously) advise someone who was looking for FMT against looking into your clinic. Partly because of the "probiotic infusion" thing, and partly because your website says you only do it for c.diff, and doesn't mention anything the buzzfeed article talked about in regards to providing stool for at home FMT.

Your website says it's $675 for each FMT infusion, but the buzzfeed article said it was $320 + $100 shipping for eight samples. That latter one would be affordable for me if I can get into subsidized housing soon. But I would still want to be sure the donor & processing was high quality, otherwise it would be a waste of money.

Finding a good enough donor is the primary obstacle for many people looking to do FMT, so I really appreciate what you guys are doing, and wish there was a way I could bring about more doctors doing the same thing in other states.


Original 18 Dec 2017 (7 comments).
 
FMT Clinics
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