Fecal Transplant- looks like it's working - Volume 2

This is a continuation of this thread:

www.healingwell.com/community/default.aspx?f=30&m=3477209&r=x

In it, a mod asked me to start a new thread because the old one was getting too long.

This is an update on my Lyme situation since I tried fecal transplants (FMT's) several months ago. Basically, I have had Lyme for years and was on antibiotics for all that time. I couldn't get off them without the Lyme coming back. So I decided to try doing fecal transplants and then 4-6 weeks later, begin the Buhner herbal protocol.

I went off my antibiotics and did multiple FMT's. Usually the Lyme symptoms come back within a week of stopping antibiotics, but this time they didn't. It really seems like the FMT's helped. I (and my donor) go into detail about all of it on my last thread. This post is meant to be an update, so let me get to it...

I have stayed on the Buhner herbs more or less since September. After I started the herbs I figured I'd just do the FMT's again if I seemed to need them. I felt like the Lyme was mostly under control, but another problem emerged: depression was getting really bad. I still don't know for sure if it is from Lyme or because it is winter (it seems like I get depressed every winter). I set about finding ways to deal with that and somewhere in there, there was a week I forgot/got lazy and didn't take the Buhner herbs.

Big. Mistake. about 5 days later, my neck and several joints started hurting. The onset was super fast and it got worse within only a few hours. So I hurried home to take the pills. After a day or two on them I was feeling better, but it is clear the Lyme is not gone yet.

Meanwhile, someone in the last thread mentioned in a post that FMT's help with depression. I had read that before, but had forgotten. LymeAssistant asked me if I wanted to do another FMT and I was all about it!

This time, we followed a suggestion (from the last thread) to not use a blender. Instead, we used a sealed plastic bag. This went way better for a few reasons- it didn't smell so bad, it didn't make noise (so no sneaking down to the basement to make poop smoothies), there was no blender to clean and I do believe the FMT was more effective. The whole idea was to avoid introducing air into the poop because that would kill all the anaerobic bacteria we're trying to transplant.

Surprisingly, the poo was way more liquidified than before. That means no clogs. LymeAssistant said this was because he used the plastic bag instead of the blender this time. It went in easier than ever, but as soon as I got one bottle in, my stomach started cramping just a little bit. I don't remember that happening before. I was thinking, "oh great, now my stomach is going to be sick too- I already have a nasty cold." So I did what any reasonable person would do in such a situation. I used the second enema bottle.

Then I had to lay there awhile. I knew if I got up I wouldn't be able to hold it.

When I finally got in bed, I was still miserable. My cold had seemed to be getting worse and I was super cranky and generally a sad sack. LymeAssistant talked to me a few minutes and I was surprised when I realized I was laughing and cracking jokes. We stayed up the rest of the night goofing off. about 2 hours later my cold seemed markedly better and I could actually breathe again.

All this may well be placebo, but I'll take it! Right now I feel good and I will definitely do more FMT's. Anyway, the whole point of all this is that the FMT's seemed to have helped but I still have to stay on the Buhner herbs for Lyme. If I stay un-depressed I'd say I'm doing pretty well.

I will try to reply to people in the old thread here on this new one.

Hi LongtimeLymie,

I'm very happy for you, that you are getting some relief, and that the FMT helped to prevent some of your Lyme symptoms from coming back. That's awesome. Truly awesome !

Did you read the protocol I used ? Just wondering since I used a plastic bag to prepare my sample, when I did my FMT. I did my own FMT after researching everything under the sun, for over a year. In the end, it was successful, and I only wish for others to understand, and to have the relief I have found. I know that IBS is somewhat different than Lyme, but I have often wondered about all the anitbioitics that are taken for Lyme and what affect that has on the microbiome. After all, disruptions in the normal flora of the microbiome have been associated with Depression, anxiety, Rheumatioid Arrthritis, Chronic Fatigue, and a host of other ailments. So, I've wondered what this antibiotic use for Lyme has been doing, and what role it plays in the ongoing health issues that are associated with Lyme. Could it be that the disruption of the microbiome by all those antibiotics is unwittingly giving Lyme patients more problems ? I tried to post a link to research into this, in the last thread, as it seemed informative in helping to understand if this is relevant and further our understanding of what works and what doesn't. But it seems to not have been approved. I tried.

A little bit about me. Eleven years ago I was diagnosed with a chronic disease for which there is no cure. I've known for a long time what will most likely lead to my death, it will be a heart attack, or stroke, or an infection that stems from my kidney disease. My kidneys will fail. I'm in stage 3. I have learned so, so much on my own, doing my own research to learn about this disease, than my doctor has ever told me. A whole file drawer full. I was even on a trial for a 'first ever' drug to slow down the progression on the disease. However, after 7 years I figured out (long story) that it was this trial medication that actually gave me another problem : IBS. I hated IBS. Really hated it. So, I did a lot more research. Eventually I found out about FMTs, and the Human microbiome. I read everything I could find, which is a quite a bit. I studied doctor's protocols, I studied clinical trials, I studied everything I could find. . Eventually one day I asked myself, "why is an FMT so successful for treating C. Diff. and the trial for IBS using an FMT only achieved a 50 % success rate ?. It was then that I realized that the protocol these doctors were using was faulty. Almost all doctors doing FMTs, at that time, were using the blender method. It turns out that around 90% of these bacteria we are trying to transplant are anaerobic. So they were making a big, big mistake.

Anyway, I've gotten rid of my IBS-D using a home FMT. But, I went off the trial medication. I know it will shorten my life some, but I'm not going to live that life with IBS. I hated IBS.

Back to your FMT. It seems to make a difference what kind of protocol is followed. I know one has to get over the 'yuck' factor. At least I did. Everyone has changed a diaper right ? Well, it's no worse than that. In fact, I never smelled anything, and I never touched anything either (sterile surgical gloves). So, really it wasn't bad, just a psychological thing to get over. The best doctor in the world, in my opinion, uses an antibiotic for 5 days, then does a clean out with Muricell,(like for a colonoscopy) and then does the first infusion. The next 5 days he does an infusion each day,(without the clean-out). If you want the protocol I used please contact me personally, by email.
I don't know how this works on this site yet. Let me know.

I'm pretty impressed with your success so far. My deepest respect ! Wow ! I really hope you continue to have positive outcomes. If I can help you, let me know.
I find it really interesting that Traveler has had a positive outcome. That's so awesome ! I want to learn more about what she did, and how it worked. Perhaps, just perhaps, one, or both together, will turn out to give the best outcomes, for the most people. It's about finding the answer. Lord knows most doctors aren't researching this as much as you and I. (not all, but most).

I have a friend, she is such a sweet person. She has MS, IBS, and UC. She's just the sweetest thing. It's hard for her. She has a motorized scooter. I can only imagine how it is to have her other conditions on top of her MS. Anyway, I've been trying to help her financially once in a while, and to give her cutting edge medical research, that she can read and share with her doctors to help them understand that all of her conditions have already been reversed by an FMT. There's quite a bit of good medical literature on it, if you look hard. Anyway, she recently had her colon removed. It breaks my heart. If only they would have been able to try this intervention, her colon could have been saved, and healed. She is such a sweet thing ! I empathize with her struggles, and wish the doctor's could have done better for her. It's sad.

I need to make a correction, I made a typo mistake in an earlier post. It is a clean-out using Murilax, instead of Muricell. Sorry for any confusion.

I hope that they get the protocol right, so they don't skew the results badly on the obesity trial. Donor selection is important for success. Having a donor that has a healthy, widely diverse microbiome, and that eats a diet that supports the growth of good, helpful bacteria, instead of the bad ones, may also play a role.

IBScure-it said...
I know that IBS is somewhat different than Lyme, but I have often wondered about all the anitbioitics that are taken for Lyme and what affect that has on the microbiome.

IBScureit said...
So, I've wondered what this antibiotic use for Lyme has been doing, and what role it plays in the ongoing health issues that are associated with Lyme. Could it be that the disruption of the microbiome by all those antibiotics is unwittingly giving Lyme patients more problems ? I tried to post a link to research into this, in the last thread, as it seemed informative in helping to understand if this is relevant and further our understanding of what works and what doesn't. But it seems to not have been approved. I tried.

To assume that it's the abx that are giving people the most issue is not only not helpful, but is completely wrong. Fecal transplants will not be the only thing a person needs to do in order to beat a bacterial infection that has had time to 'settle in' and become chronic. Can it be a game changer for some with these infections? Possibly, but we won't know for a long time. It takes a LOT of people to use it first before something like that is known.

I used this one herbal protocol and I healed amazingly fast. I was in treatment for Lyme for only 1 year after having it for over 40 years. Almost unheard of, to be honest. I thought that maybe - just maybe- I had stumbled onto something really HUGE!! Yet, come to find out the herbal protocol that I used doesn't work for but a handful of people!! There are so many things that come into play when a person needs to heal from chronic Lyme, that to limit our thinking to believing that what works for one will work for another, or that one form of treatment is always harmful just isn't the truth.

While I do applaud you for figuring out your health issues, you really haven't lived with or studied Lyme in depth and to assume that you know how to heal Lyme (or what's most damaging) is not something you should be doing. It's one of the most complex bacterial infections known at this time. It takes a multi-faceted approach, and what people choose to heal with is strictly their choice. This is a site for support, not for criticizing treatment choices that have healed many.

We do have rules about flaming or attacking other members treatment choices that everyone agrees to follow when they join this site. Please review the rules and refrain from this. www.healingwell.com/community/default.aspx?f=46&m=106997

No, for Lyme I used one that doesn't seem to be effective for as many people as Buhner's, it's called the Chronic Tonic: www.healingwell.com/community/default.aspx?f=30&m=3244272


When I was looking for herbal treatments for Lyme online, for some reason I never stumbled across Buhner's site (maybe the site wasn't up and running back in 2008 - 2009?).

Then I added Houttuynia for Bartonella, and treated for Babesia and those three treatments seemed to clear all the other tick-borne infections I had. You can read my treatment protocol in a nutshell if you follow the link in my signature line - or ask me more questions.

Hi Longtimelymie. I just read your threads and it was very interesting.

I have a question that you may be able to help me with. I have been taking antibiotics for several months and have developed terrible reflux as my treatment continued. I'm almost positive that it is because I have destroyed my gut flora. I didn't take any probiotics at the beginning of my treatment and even though I take them now they aren't helping. I even went of my antibiotics for several weeks and the reflux stayed the same. Prilosec has only moderately helped.

I have read about fecal transplants before and I was wondering if it could help me. Would it restore my gut/intestinal flora? Does it only restore the colons flora? I'm willing to do anything at this point.

Oh my....I sure am late on the reply. Sorry, guys!

Sean, I have had some terrible stomach acid but it wasn't right after abx for me. I actually got to slacking on the FMT's and late last year I was starting to have way more IBS problems than I ever had before. Bad acid reflux was one of them.

It didn't occur to me to try an FMT for that, but what I did try was hitting a tanning salon. Now, I know that is totally against the advice of most doctors. But I had this theory that it was some sort of infection causing the symptoms (acid, bloat, stomach cramps). I read some info suggesting that oral vitamin D supplements may be counterproductive and I knew from my genetic data that I have problems with vitamin D. So I went to the tanning salon, did 2-3 minutes in a tanning bed and I was soooo relieved to find that the cramping and acid were gone after that. The bloating still continued and even now it's still there, but at least I am not in pain.

Pirouette, I have actually laid off the FMT's. We continued them for some time, though. I feel like I am improving a lot (I think the improvement is a combination of things I've been doing, including the FMT's).

I recently made an attempt at going off the Buhner Lyme herbs and I didn't have any problems for a week. The period I can go without symptoms is getting longer- slowly but surely.

Welcome to our community, Maruchan!

Panic is a symptom of these infections. If your lyme test was positive...and you have symptoms...then you have active Lyme disease...that needs treatment...more than 40 days.
If your 'feeling worse' happened during that treatment...then it was most likely a herxheimer reaction from the die-off of bacteria.

I suggest you seek out a LLMD (Lyme Literate Dr.) for treatment.

Or, alternatively start an herbal protocol. It's important that you treat these infections.

I believe the fecal transplant can help but I wouldn't solely rely on that.

We encourage all new members to read through the thread at the top of the page titled: "New to Lyme,..Start Here!"

If you need help finding a LLMD, just start a new thread titled: "Looking or LLMD in/near______
and fill in the blank.

Good luck!

Did you get any symptom improvement after the 50 days of antibiotics? or a worsening?


Is your non-hodgkin lymphoma in remission...? was that treatment successful?


I think it's possible that the antibiotics that you finished two months ago...may have brought a co-infection symptoms to the forefront.. (your panic worsening)

What antibiotics were you on recently?

An herbal protocol is something many on this forum do...so there is a lot of knowledge.

Two popular ones:
Buhner
Cowden

As, I think the FMT may be helpful..I wouldn't want to see you rely solely on that for treatment.

Keep reading threads, post any questions...or come on to vent when you're having a bad day...

I'm not sure where else to turn, and I really hope that somebody here can help me. I actually used to scour the Lyme boards on Healing Well back in the day, but I've never posted before. To share my story, I contracted Lyme sometime when I was younger and have had a headache every second of every day for the last 10 years. The Lyme came out 4 years ago after a skateboard crash and I ended up dropping out of college and receiving 18 months of high dose IV antibiotics for my tick-borne diseases. I was taking probiotics during this time, but I was taking 3-4 antibiotics at the same time this entire time.

I used to lean towards constipated, but after all of the antibiotics, my constipation ended so obviously something changed inside of me. In fact, my stools almost seemed to be healthier, but obviously they weren’t. I then started herbal remedies after antibiotics didn't work which included high dose probiotics, coffee enemas, and diatomaceous earths along with normal herbal remedies. My guts have always felt strong and I was eating hand over fist fiber. Beans and nuts all day everyday. In August of this year I was doing better than I ever had.

Then one day I woke up feeling terrible again. A week later a rash developed on my sensitive area and noticed that there was a very noticeable mucus sheathing, which I’d never had before, around all of my stools which were still all big and healthy. I tested negative for STD's, twice. The mucus sheathing continued alongside my rash and feeling run down and my stools started to look worse. I then ended up in the hospital a couple weeks later after dinner from a small bowel obstruction right next to my ileus that looked like a kink. 10/10 pain. The SBO(small-bowel-obstruction) was released using a naso-gastric tube, but the doctor performed laproscopic surgery on me anyways because he had no idea why a 23 year old with a perfectly health GI would have an SBO.

After the surgery, my stool kept worsening until it felt like I just straight wasn't digesting any of my food. Crazy urgency, and it looked absolutely terrible coming out. It looked like I was sick. 2 months after the operation abdominal pain started and I quickly realized it was colon pain. I was given a fecal workup and came back positive for C.Diff. I treated with both flagyl and vancomycin, but neither seemed to do anything, even while I was on them. I'm also not going 3 times a day with D like they say C. Diff does.

I recently tested negative for C. Diff but I still have constant migrating intestinal pains. I stay away from harsh fiber like beans, nuts, and raw vegetables cause they can mess me up. My stool is not loose, but it doesn’t look close to healthy. The intestinal pains never stop and I just want it all to go away so I can go back to treating lyme which makes me so crazy sick. I haven’t been this sick in 4 years. Now that I tested negative for C. Diff there is no way I can get treatment from a doctor, and my gi doctor brought up things like Crohns and UC which just make me depressed as heck. I've only been stuck in this pit for 5 months and I want to jump out as soon as possible before this gets harder to treat.

I've read up everything I could about FMT and microbiomes online and I've got two people somewhat close to me who have opted to be donors, but I don’t know for how long. I've met with all types of doctors, even integrative doctors and no one wants to talk to me about it. It's not against the FDA to help someone accomplish their own FMT's at home, but I guess it’s sort of a gray area right now and doctors don't want to get involved. I reside in NJ and I really thought that finding an open minded doctor would be easier. I also thought that finding a donor would be easier. Especially in the tri-state area. I figured that with such an abundance of people needing FMT there would be tested clean people selling their stools freely.

There's a lot of conflicting opinions online and I'd really like someone more experienced in this to talk to. I really, really want to do this right the first time. I can't stand this sickness. If anyone wants to talk over email or phone I'd love that as I understand this website does have certain restrictive rules attached to it. Plus, I’m sure no one checks this every day.

I’m currently about to order a couple thousand dollars worth of fecal testing for myself and my donor who I really hope is clean. I will post my progress on this board going forward and I hope to be one of the success stories soon. Sorry for such a long post, but hopefully it convinces you that I am who I am, and that I need help with this. Please reach out

From your boy,

BlueMoonBoy