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Fecal Transplant- looks like it's working

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Posted 8/18/2015 2:25 AM (GMT 0)
I've had chronic Lyme disease with multiple coinfections for at least 5 years. For most of that time I have been on varying antibiotics. I've also tried tons of treatments- I take something like 70-90 pills a day, do saunas, detox baths, etc.

This disease almost took my life- literally and then figuratively. I am certain other Lymies reading this know exactly how desperate the situation can get.

So a couple weeks ago, I stopped my antibiotics in preparation to try fecal microbiota transplants. Usually in recent years, stopping antibiotics would make my symptoms return after a week. I have done several transplants and so far, no Lyme symptoms.

I cant be sure until more time passes, but since it appears to have worked at least up until now, I'm doing what I swore to my donor I would do if it worked: I'm going to tell everybody with Lyme. On the flip side, if it ultimately fails, at least there will be a record of it out there online for people to read.

I'll try to answer questions if anyone has any. Pretty much, my donor got tested for tons of diseases and parasites. I stopped antibiotics and soon after, we were putting poop in a blender then pouring it into emptied enema bottles. I put it up my butt and then (typically) went to bed.

Okay, if anybody else has done this I'd be interested to hear how it went. And if anybody has any questions I will try to answer. I also intend to give updates periodically to post what the longer term result is.
Posted 8/18/2015 2:34 AM (GMT 0)
Did you have any intestinal problems that you were trying to treat...or was it strictly to treat the lyme disease?

How did you learn about this?

have there been success stories?
Posted 8/18/2015 2:49 AM (GMT 0)
I did it in an effort to get rid of Lyme and the coinfections. I figured it was a good bet since my gut bacteria had to be messed up after all those years of antibiotics.

When I say "good bet", that's just my own humble opinion. I've had multiple LLMD's and even though they're great, even they don't agree on lots of things about treating Lyme. I got frustrated with that early on and decided to make up my own mind what treatments to do. I do listen to them, but I also read a lot on my own trying to figure out what I feel is the right course of action. It seems like nobody really knows how to cure this, so if even the doctors are guessing...I'm more comfortable doing my own guesswork.

I believe there's strong evidence that gut bacteria are a huge influence on our immune system and on how we process and absorb nutrients. Both of those are important in Lyme. Antibiotics, which I think are necessary, destroy that balance. In my mind, the likelihood is that a healthy micro biome would help.

All of this is my own guesswork. I'm not even sure if it makes sense when I try to explain. But to me, the decision to do this was very logical. How else could I do something so gross??
Posted 8/18/2015 3:58 AM (GMT 0)
Okay - I have some more questions...since you offered.

Where did you find the donor? You swore to your donor that if it worked, you'd tell everybody with lyme.
Did your donor have lyme and use this method to treat? Was this done outside of the medical establishment? ie. not in a hospital/clinic setting?

I've heard of fecal transplants before, but I can't remember what it was treating - was it c-difficile?

I know, lots of questions.....
Posted 8/18/2015 6:13 AM (GMT 0)
I'm happy to answer questions. If it helps someone else dealing with Lyme, it's well worth it.

The donor is my boyfriend. He is healthy and hasn't taken antibiotics in years, had access to the screening tests and we are together enough that it was convenient (meaning, no poop storage in my fridge).

Before I met him, my friend's 5-year-old son was going to be the donor. That is not ideal because of his age, but out of everyone I knew at the time, he was the only healthy person who hadn't been on antibiotics recently.

I asked my LLMD if she thought fecal transplants would help with the Lyme symptoms. Her immediate response was that yes, they would help. I asked if there was a doctor or facility who could do it. She said not that she knew of, that most people were doing them at home. She explained how to do it and emphasized that the donor should be tested for diseases and parasites.

My donor/bf has never had Lyme or any chronic illness. He does know what I've been through because of this disease and he's been supportive about my post here. He's even reading this (Hi, baby!).

Yes, fecal transplants are becoming well established as a treatment for C. difficile. Now there are more people trying them for other conditions, especially intestinal diseases.

You asked me some questions before that I missed:

How did I learn about this? It's more that I put together some information in my head and decided doing it made sense. In reading about health-related stuff, I saw a lot of mention about gut bacteria. Studies pointed to certain types being key to processing or producing nutrients the human body needs, serving valuable purposes in crowding out and fighting bad bacteria, affecting gene expression, being a big part of our immune system. I became convinced that all that bacteria living in the gut is no accident- we need it. And unfortunately, we kill a lot of it off when we take antibiotics. It also gets knocked out of balance by other things. Some of us probably start out in life with a deficiency of good bacteria. For instance, if we could not be breast-fed or had to be born by C-section.

Out-of-whack gut bacteria has been tied to autoimmune conditions of all sorts. The government claims that chronic Lyme disease is really "Post Treatment Lyme Disease Syndrome", an autoimmune reaction. I personally doubt that, but want to consider the possibility just in case.

I thought it was very likely that by now, my gut bacteria was way off balance. It made sense to replace it in its entirety, not just by taking a probiotic (I had already been taking those and was still sick). The info I read said there were many, many more species of bacteria in our intestines than we knew. What are the odds those unnamed bacteria are important? A lot of them don't survive long outside the body and we haven't been able to cultivate them yet. The only way I could get them in their proper ratios was from a healthy donor's stool.

Later, I remember seeing a case study of a serious infection (not C. difficile) that a girl had. Her doctor decided to do an FMT on her and it cured the infection. Long term antibiotics had not cured it. When I read that, I really got to thinking...hmmm, now that's at least 2 infections that are cured by FMT. I wondered if an FMT could help with other infections, like Lyme and coinfections.

Success stories? I haven't seen much mention of it being used for Lyme, honestly. So I suppose doing this was a gamble.
Posted 8/18/2015 6:31 AM (GMT 0)
Thank you for answering my questions, and being candid in your answers.

I'm sure there will be other questions in the morning, when people come on to the forum.

It is an interesting topic...

That is great that you have not had return of symptoms....and hope you stay symptom free!
Posted 8/18/2015 9:35 AM (GMT 0)
Congrats on your success. I can see the benefit of replacing the proper bacterial ratios in the colon. The increase in bifidobacterium and other beneficial bacteria will lead to significant health gains. I do not see how you can affect the bacteria in the small intestine with a FMT. Technically, you are not curing Lyme as the bacteria are still present but you are alleviating symptoms which is what I consider a huge success. Good luck with your continued health and thanks for telling your story.
Posted 8/18/2015 9:59 AM (GMT 0)
Could I ask, when this treatment started? And did you do the transplant multiple times periodically, or is it necessary only once? Thank you!
Posted 8/18/2015 3:42 PM (GMT 0)
If healthy gut bacteria is the goal, I don't understand why healing the gut and using high dose probiotics (specific strains) wouldn't have worked.

So what am I missing?
Posted 8/18/2015 4:42 PM (GMT 0)
Thanks everyone for the well wishes :)

I do think Georgia has a point. I don't know how FMT could "cure" Lyme or coinfections, because I don't know that it actually kills Lyme bacteria. It's worth pointing out that some LLMD's don't believe Lyme is curable at all. They believe that at best, it is kept in check by the body, and they may be right.

I could be wrong, but it was my understanding when I decided to do this that most intestinal bacteria are in the colon.

Hornet599, I started doing FMT's about 2 weeks ago. I have done one about every other day. I am planning on doing them for at least a month, then reevaluating whether I think I should continue. Since I couldn't find anything online about someone using this for Lyme, I was really unsure of how often to do it. I can say that I did notice a difference after the first FMT.

Traveler, it's possible those things would have helped, too. I had been on high dose probiotics for years and I did think they helped my immune system. As for healing the gut...I have to be honest, I have really struggled with my diet. It has greatly improved, but I am not perfect. Anyway, I was thinking that FMT's would be a fast way to help that process along.
Posted 8/18/2015 7:15 PM (GMT 0)

Traveler said...
If healthy gut bacteria is the goal, I don't understand why healing the gut and using high dose probiotics (specific strains) wouldn't have worked.

So what am I missing?


There are hundreds of strains that live in the GI tract. There is no way probiotics and diet can change someone with a severely damaged or mis-proportioned flora. I'm not saying I would recommend it as a first or 2nd option in therapy, but as a last resort, why not.
Posted 8/18/2015 7:37 PM (GMT 0)
It took a lot of different strategies for my intestines to heal to the point that they have, but it included things like bone broths, raw goat milk kefir (homemade), store bought probiotics for specific strains that I still needed, and several herbs and acupuncture. So I fully understand a severely compromised intestinal tract. There wasn't one Western Medical Doctor (even Gastros) that could help at all - not one. Even my LLMD didn't know what to do about it all.

I would like have tried it as a last resort as well, but I would have had to get a lot worse - sorry, I just don't have anyone that I trust enough to share that much with!!

I do hope that this therapy helps with your intestinal issues, but I agree with Georgia Hunter in that it won't help with the Lyme infection. You need antibacterial treatments, with either pharma meds or alternative meds to heal from these infections.
Posted 8/18/2015 7:57 PM (GMT 0)
Crazy what we go through in an effort to get well!
Posted 8/19/2015 8:07 AM (GMT 0)
Fecal transplants are literally getting a lot of attention recently. It's kinda like getting IViG or a blood transfusion except it's poo. I find no discrimination in this practice compared to other tranfusions/transplants as long as the donor is free of pathogen's. I hope more studies are done on this therapy.
Posted 8/19/2015 3:00 PM (GMT 0)
Actually, there is plenty of proof that we can't get rid of every single Lyme bacteria. During an autopsy of those that have had chronic Lyme and even though they lived their lives without a bunch of symptoms (seemingly clear from them all), they still had the Lyme bacteria in their brain. But it's not known if those bacteria can actually reproduce and create illness again or not - at least that's the way it was when I last looked it up.
Posted 8/19/2015 4:54 PM (GMT 0)

candleinthewind said...
Crazy what we go through in an effort to get well!

No kidding! I'll do whatever it takes. Obviously.

I thought I would post an update so people can know more details if they're interested.

about a week after the first transplant, I started having anxiety. It was pretty bad and it progressed to near panic attacks by Monday.

Previously, it briefly occurred to me that if the FMT's worked, I might need to adjust the dosages of medications and supplements I take. I figured my intestines would be better at absorbing them and it's possible the FMT could change how my body had been functioning, which would change how much I needed.

Yeah, I proceeded to forget all about that.

Well, turns out at least part of my anxiety was because now my dosages of meds and supplements were too high for me. To be specific, I was on 450mg a day of Wellbutrin XL, SAM-e 400mg, 800 mcg of methylfolate and 5000 mcg of methyl B12. I know all of the methylated stuff in excess can cause anxiety, and so can too much Wellbutrin. I cut my doses of all of them yesterday (took 300mg Wellbutrin, 200mg SAM-e, 400 mcg methylfolate and 2500 mcg methyl B12). That made a lot of the anxiety go away, but there is still a bit there.

I should point out that I have been on those dosages for years. When I originally added each one, I had slowly increased the dose until I stopped seeing a benefit from the increase. I am certain that for all that time, those were the right dosages for me. In the case of the Wellbutrin, I have been on it for well over 10 years and there was never a sign that 450mg might be too high (i.e. no anxiety and panic attacks).

So...now I am trying to figure out what's causing the remaining anxiety. Thankfully, it is way more manageable now.

Other things: yesterday (before the FMT was done) I had particularly bad balance problems. I almost fell a couple of times. And joy of joys, I've got a vaginal yeast infection. All you ladies know how fun that is. Overall, though, I am functioning very well. I own a business and I've been happy to have more "good days" to work with. I don't feel sick so far or have bad brain fog. Before, those things happened almost every day. I had been having some good days here and there, but never so many of them in a row as I am having since I started doing the FMT's.

Sorry if this is TMI, but I am trying to post everything that might be relevant. I am planning on continuing to post updates and details.

I learned exactly how to do the procedure from a website about FMT's. My doctor had only given me a one-sentence how-to, and I wanted more details. There was actually a video on the site which was very helpful (it was clean- nobody got naked and no real poop was involved). It recommended putting the poop in a blender and adding enough distilled water to be about 500 ml.

I am finding that at least for now, 500 ml is too much for me. Usually I take store-bought disposable enemas, pour the contents out, rinse them and use them to administer the poop slurry. For 500 ml, that would be about 4 of those bottles. I had been doing only 2 bottles and it was relatively easy to "hold it in". However, going up to 3 makes it uncomfortable to hold. I think being upright makes it much more difficult, too.

I've read varying opinions on how important it is to hold it in for a long time. Some say it's important, others say its not. I thought keeping it in as long as possible was best, even if that meant I could only do 250 ml.

Most of the times I've done FMT's, I have completely retained all of it. The next day, if I poop it comes out normal looking. The water part of it gets absorbed.

But the times I couldn't retain it and felt like I needed to poop really bad after 5-10 minutes, when it came out, it was still watery and it was a mess.

Hmm...other random details:

1. Vicks VapoRub under the nose helps a lot with the smell.
2. Some people put the blended poop through coffee filters or a strainer, but we do not. We figured that's just an extra poop-handling step and extra poop-handling equipment. No, thanks...so we just keep it in the blender a little longer. That's usually fine, but if the enema bottle tip gets clogged, it is totally not fun to fix.
3. The video recommended using saline solution powder in it. I skip that because I believe salt is anti-microbial. I am not trying to kill any of them! Anyway, in studies I saw comparing saline and without saline FMT's, the saline ones were only slightly less effective. Both types still had good results. Doing it without saline had better results though.

Okay, that's all I can think of now. Over the next few weeks I will keep posting this stuff if people are interested.
Posted 8/19/2015 10:58 PM (GMT 0)
The first time I read this I actually thought you were kidding. I have a chronically ill friend at work and she said, "Oh no. It's a thing" Well, the things we do for health. And your generous boyfriend, the things we do for love.
Posted 8/19/2015 11:19 PM (GMT 0)
For a long time, Lyme made me so sick I couldn't work, couldn't think, couldn't do anything. I'm just hell bent on getting my life back.

But yeah, I can't say all this hasn't been embarrassing. Cringe-worthy...asking your hot new bf if he will put his poop in a blender for you...trying to hide the blender noise and smell from your roommate...hoping your dog won't rat you out by showing way too much interest in the bathroom cabinet...
Posted 8/19/2015 11:31 PM (GMT 0)
I know! I was imagining how you would ask him and if you would be concocting this in the kitchen? I'll bet your roommate thinks your a terrible cook! or drink putrid smoothies.
Posted 8/19/2015 11:38 PM (GMT 0)
LOL! Purple Tulip!!!
Posted 8/19/2015 11:48 PM (GMT 0)
lol! My poor roommate has a super sensitive nose, but I haven't told her what I'm up to. So I'm sure that despite our best efforts to camouflage the smell, she smells it and thinks, ***?

Oh no, nowhere near the kitchen! We got a "crappy" blender (hahahahaha) from Target for $20 and everything stays in the bathroom. Except last time, when we took it down to the basement trying to hide the blender noise. I could hear the Mission Impossible theme song in my head as we snuck downstairs at 1:00 in the morning.

My roomie is a germophobe. I suppose I'll have to tell her at some point, but then she will probably never trust my cooking again.

My bf made a smoothie at home the other day (in an uncontaminated blender!). He was putting a banana in it and all I could think of was the chocolate covered banana in the poo video. Nope...smoothies are not on the menu for me.
Posted 8/19/2015 11:59 PM (GMT 0)
Wow, yeah, they wouldn't be for me either if I was doing what you are!! LOL!! I'm so glad you can keep a sense of humor about the whole thing though!!
Posted 8/20/2015 12:11 AM (GMT 0)
Wow! I can't believe that somebody else has been doing the fecal transplants. I just started doing them 3 days ago. My Lyme has given me a lot of symptoms in my intestines. I can actually "feel" my intestines flaring up from the Lyme. Anyway, this past weekend I got so sick of it and had been considering doing fecal transplants for awhile that I asked my daughter (who is 4.5 months pregnant) to donate. She didn't hesitate. This evening will be my 4th day of doing the transplants and I feel better already. While doing the first treatment I felt a sense of well being within the first 2 minutes. My intestines have not had the usual sick feeling since I did the first transplant. The fact is that probiotic supplements can never be nearly as diverse or effective as what is inside of a healthy human intestinal tract. Our gut microbiome actually produces most of the serotonin that our brain uses. I hope that this turns out to be a big piece of the puzzle for me.
Posted 8/20/2015 12:20 AM (GMT 0)
Oh cool!!! That's awesome, Missteak! I'd love to hear updates on how it's going.

So you've been doing them every day? Do you also take antibiotics?
Posted 8/20/2015 4:15 PM (GMT 0)
Hi long time Lymie,

Yes, I have been performing the fecal transplants every day. So far, so good. I will definitely keep you updated on my progress. Please keep me updated on your progress as well.
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