“The day after a Fecal Microbiota Transplant (FMT) [In Northern Europe] I woke up very constipated, but no other worsening than that. But two days after I became very sick and I just get worse and worse. All my symptoms are worse. A lot of extreme pain, inflammation, neurological symptoms, can’t almost walk etc. I know very well about herx reactions.. I have had a lot of them. …
I just wonder.. Do you think a single (or I’ll do a second one a week after the first one) FMT treatment can produce extreme herx for a really long time if you have a really bad flora as I have? Can it actually last until most of the foe species are gone, if the species from the FMT really has colonized my gut?”
I have an early 2014 post on FMT. My (limited) understanding from reading the literature is that having a herxheimer reaction has been sometimes reported, although usually minor ( cite1). I have located some online journals dealing with more extreme reactions for reference in answering your questions below.
Patient Experience #1
“After the first few transplants I developed die-off… Now I’ve done several cleanses and tried different prescriptions but this die-off did not stop for about 2 weeks straight – It was horrible and severe! So I took a break from the transplants and resumed them several weeks later. The die-off symptoms still remained but became less severe after each transplant. I never did the top-down approach, only bottom up….
After 13 transplants, my donor and I decided to take an extended break for a while and see how things progressed. I could definitely tell a change in consistency and smell. There was definitely less abdominal pain and bloating. However, although I had experienced improvements, my IBS had not been totally eliminated and my CFS symptoms remained.” [cite2]
Patient Experience #2
“Day 2 (after FMT): It’s now Day 2; I ended up holding the solution in all the way through today. The abundance of fiber I ingested yesterday clogged me up a bit, which I do not mind because the longer I can hold it in the longer the bacteria has spread and propagate. I ate an excessive amount of fiber yesterday which normally would make me quite ill; yet it only gave me subtle gas – nothing compared to what it did before. I have not noticed any substantial changes yet however. My diet will be essentially the same as yesterday.
Day 3: Finally went to the restroom at 2 PM today; I had not been able to go since the procedure – this means I held in the solution for 48 hours.The stool was a type 5 on the Bristol stool chart; therefore not in line with healthy stool. I’m not sure whether this is due to die off of the bad bacteria or if it means the procedure does not work, I will have to wait and see. I should know that a heavy amount of fiber is recommended so that the new bacteria can propagate; however if your body is not used to dietary fiber then take it easy the 1st few days or you will constipation yourself – a mistake I made. Today I begin taking Intestinew; a supplement meant to help repair gut lining in order to fix my leaky gut.
Day 4: It’s interesting; I’m actually feeling a bit worse than before I did the procedure. I’m having IBS attacks frequently and my anxiety has risen. I followed the procedure perfectly; so I’m quite dumbfounded on how it could make things worse. Either my problem extends farther than dybiosis or I’m still experiencing die off symptoms; I hope it’s the latter. If anyone has experience with fecal matter transplant die off symptoms please do share what they were. Today I’m continuing with Intestinew and reducing the fiber that I’ve been eating to try to calm the symptoms down.
Day 5: Due to a lack of any results I’m going to discontinue this journal here; I will revisit FMT in about a month and will update my progress then. This specific FMT unfortunately did not yield any results; this may be due to a variety of reasons which will be addressed next time. I still feel FMT is a real means of fixing the bacteria in one’s gut but I can’t say anymore until next month.
[Read the end of this thread, which is page 2, to see what I did following this journal. The FMT’s did work, but it took a much more comprehensive plan.]” [Cite3]
Patient Experience #3
“Once I gave my mom normal functioning bacteria [via FMT], her immune system regained it’s intelligence. She did have severe die off and pain during the FMT’s, but it appears to all have been worth it. Best of luck to all. Search for the best donor! I can even help if you need. Tessnik@yahoo.com” [cite4]
We do not know what the risk(odds) is for a more extreme reaction. We know that it does occur.
- Duration can be expected to be 2-3 weeks. Unlike antibiotics which have a half-life of hours (i.e. the time for half of it to leave the body), organics (bacteria) may not decrease but increase. This applies to both probiotics and fecal transplants.
- Given that this reader is well familiar with herx, it implies that the bacteria that she is fighting likely “explodes” like a suicide bomber when killed, dumping its full load of toxins into the system.
While repeated FMT does work in some, I would suggest considering a slightly different route before the 2nd FMT, namely:
- Myarisan — slowly working up from 1 tablet to normal dosage (18) and then 54 until no herx happens
- Prescript assist — slowly working up to 4x bottle dosage until there is no herx at that dosage
- GeneralBiotics’ Equilibrium — as above
The reasoning is following this idiom”The operation was a success, but the patient died”. Die-off or herxheimer reactions can become life threatening (especially if the MD does not “believe” in them). They can also be exhausting and result in lack of compliance to a treatment plan. If your bacteria produce strong die-off, then you need to move slowly in dislodging them. You want to aim for a state of moderate die off (hopefully with a few hours each day free of it).
Once you have done the above, then try another FMT.
As always, just academic discussion and speculation to discuss with your MD.