Fecal Transplant- looks like it's working

That's true itsnotjustlyme, ALL drugs are toxic and have side effects. I remember my son calling me when he was younger and with his grandparents asking if he could have a Tylenol for a headache... I said, "see if they have any turermic "!

They did.

I giggled when I read the Mission Impossible theme is played when it's 'time' to go downstairs...lol.

I'm surprised your room mate isn't wondering what's going on with you two...meeting in the bathroom...
I wonder what she thinks is happening...

Sounds like you're doing well - hope it continues!!!

I pretty much agree with just about everything Pirouette said.

The first time we did the FMT, I was so nervous because I was worried about what I might be introducing into my body. We did all the tests the doctor recommended, but still...there are so many things living in the intestine that we don't know about. It was definitely my biggest concern- what if I made myself worse, not better?

And it is a sad truth that taking antibiotics causes a lot of damage to the body. Sad because they are so overused that just about everyone has taken them at some time or another. I do think they are important medicines and they have saved a lot of lives. But yes, they do cause damage that often times will never be reversed. (Not just to the microflora, but to other things, such as telomeres.)

There were a lot of things I worried about, but one thing that comforted me somewhat is knowing that the body is extremely adaptive. Many of those with damaged gut flora, for example, have been able to live relatively productive and healthy lives. Somehow, even when devastating changes occur, the body manages to survive and even thrive. I guess in the end I decided somebody else's gut flora was just very likely to be better than mine.

Now, for the update. We've continued to do FMT's every few days. I tried again to do it during the day and once again, I was unable to "hold it" for very long. So from now on I think we will only do them when I can go to bed after.

I had been constipated a lot before, but since starting the FMT's that has gotten way better. My doctors have always emphasized that this was an important problem to solve if you have Lyme.

I adjusted my supplements more, dropping SAM-e entirely, as well as methyl B12 and 1 gram of fish oil (now I take 5g a day of triple strength fish oil). I've been managing the anxiety with exercise. I expect to further alter my meds and supplements, but don't want to do it all at the same time.

I have had only very minor Lyme symptoms. I've had very slight, fleeting pain in my jaw and ear. There have been days where my balance and coordination haven't been so great. One thing that has not changed is that my memory and cognitive ability sucks.

I have also had more signs of mild vaginal and bladder infections. I've been fending them off with Rephresh gel and cranberry extract pills. I'll take antibiotics if I absolutely must, but for now I am avoiding them.

I'm getting ready to increase dosages of the Buhner herbs, as planned before.

Just wanted to give an update, like I promised!

Hi LymeAssistant!!

Lol!! We are so glad that you joined in our community as well!! Thank you!!! Although I do find this fascinating, I don't have any questions, just wanted to say Welcome!

Hi LymeAssistant! - Thank you for adding your two cents (and your poop to your gf )


It is wonderful that you are helping your gf get well!!!

Hi Hornet!

Yes, it is time for an update. It will be full of TMI...just warning you!

I'm still doing pretty well. Now I am up to the full dose of the Buhner protocol herbs- Andrographis, Sarsaparilla, Cat's Claw and Japanese Knotweed. While I was increasing the dose, I had a few rough days which I think were die-off. Lately I have been extremely productive at work (I should mention that my worst Lyme symptoms were neurological). I have been able to think clearly and focus, which makes me so happy.

I haven't had much in the way of Lyme symptoms, but what I did have is a bladder infection and some kind of vaginal infection. I avoided taking antibiotics for either one for about a week and a half, but finally last night I gave up and took the Cipro the doctor gave me for them. So although things are better on the Lyme front, evidently my immune system is still having issues.

A few days ago, I added caprylic acid for candida, and I've been taking Huperzine A (in an effort to help regain some brain power lost to Lyme). I am not sure what did it, but lately I've been able to think way more clearly and focus better than I can ever remember.

Overall, I am really happy with how the FMT's turned out. I'll be doing some more of them after the Cipro is over.

Hi eliz3333,

Before the fecal transplant, I had been on antibiotics pretty much continuously for at least a few years. I had Lyme for a few years before that, but it went undiagnosed and untreated.

Whenever I tried to stop taking antibiotics, the Lyme symptoms would come back. Usually that would happen within a week of stopping them. As for the symptoms, those were all over the place. I seemed to have cycles of symptoms. I don't think I ever had seizures like you mentioned you do- if I did, I didn't know it. Here are some of the symptoms I've dealt with:

- Body temperature regulation problems- hands/feet extremely cold
- Chills/shakes when hungry
- Extreme loss of appetite, difficulty swallowing food without gagging
- Weight gain, despite loss of appetite
- Extreme fatigue
- Frequent systemic infections, including MRSA
- Hair loss
- Herpes simplex outbreaks
- Reactive hypoglycemia
- Heart palpitations
- Frequent localized infections, such as UTI's, yeast infections, bacterial vaginosis, jawbone infections, sinus infections, eye infections
- Tight chest, difficulty breathing; sighing or gasping for air
- Bulls-eye rashes (mine were brown- not red- even though I'm light skinned and almost got mistaken for bruises). The skin area where one bulls-eye rash was seems to be permanently scarred.
- Acrodermatitis chronica atrophicans- atrophy of the skin, neuropathy, blue veins suddenly visible beneath the skin, mottled skin
- Brain fog, which at times was severe. Sometimes I couldn't understand people speaking English to me, even though it's my native language. I would forget how to add and do simple math.
- Difficulty forming words when speaking.
-"Lyme-Induced Autism" symptoms, such as extreme social avoidance, sensory overstimulation, noise intolerance, avoidance of verbal communication.
- No reflexes
- Daily low to medium grade headaches
- Ice-pick stabbing headaches, especially behind the eyes
- Loss of vision, floaters, sensitivity to light
- Ringing in the ears, difficulty hearing
- Joint pain that migrated, especially in the hands, wrists, neck and shoulders (radiculitis).
- Feeling extremely disconnected from reality
- Light headedness
- Very bad balance, frequent falls
- Muscle weakness and muscle wasting
- Tremors
- Severe cognitive difficulties, including: forgetting the names of my siblings and husband for entire days, getting lost in places I knew well, forgetting words so often it was hard to have a conversation, inability to make decisions, not knowing the difference between right and left, inability to cook according to simple instructions, loss of job-related knowledge despite years of experience, extreme difficulty focusing, very poor long-term memory, non-existant working memory, forgetting how to do simple tasks (such as how to use soap), losing my train of thought mid-sentence, started putting words in the wrong order when speaking and mispronouncing them- people would ask me where I was from because they thought I was foreign
- Swelling, especially in the ankles and legs.
- Constipation
- Chemical sensitivity
- Frequent aches and pains, stomach cramps
- Lack of coordination, sudden difficulty writing with a pen
- Dizziness
- Gum disease
- Joints cracking and popping, TMJ
- I believe I had visual and auditory hallucinations; psychosis, out of touch with reality at times.
- Extreme, suicidal depression. It was so painful I would've done almost anything to make it stop- and I almost did.
- Anxiety
- Slow healing of wounds, easy bruising
- Big increase in rosacea symptoms; dermatitis
- Swollen glands in the neck
- Connective tissue disruptions, such as cysts, ingrown hairs, overgrowth of cuticles
- Severe insomnia for years, where I slept an average of two hours a night. Later, insomnia would alternate with sleeping too much- sometimes 12-18 hours a day.
- Change in voice
- Anemia

I had always been an active person- hyperactive in fact. But the longer I had Lyme, the less activity I could tolerate. I had always had an active mind, a thirst for knowledge...but as the disease progressed, it became less so. I couldn't have held a job for sure. I had a business and I still attempted to work at it, but only managed maybe 1-3 hours a day at times.

Now I feel much better, although not 100% yet. I think certain things really helped, and FMT's are one of those things. Right now, I am off of antibiotics still, but I am on the Buhner protocol herbs. Those have been amazing. But I made the mistake of not taking them for a few days and Lyme came back full-force, with terrible joint pain and exhaustion.

I wish I could say I'd been better about following a healthy diet, but the truth is I haven't. I've always struggled with food, although I've improved since I got Lyme.

I felt the same way about continuing on antibiotics. I couldn't keep taking antibiotics forever. I decided to try going off of them and do the FMT's plus start the Buhner herbs. I do have a relapse if I stop the herbs, like I mentioned. However, Buhner says you have to stay on them for a year and I'm only a couple months in. As long as I am on them, I feel like I'm doing really well. Most days I can work. I have less pain, my brain works better and I feel like I am functional.

There are some things I would highly recommend- the FMT's, the Buhner herbs, sauna, neurofeedback and exercise (when you're physically ready).

Hope your FMT's turn out well. I think they are a great idea, and there's nothing wrong with doing them at home. I would be sure to get the donor tested, though. With Lyme, the last thing you need is a new parasite or disease. It is gross, but it is worth it. I haven't done many more of them, but LymeAssistant and I have talked about doing more in the future if I start not feeling well.

So could you share some of the gory preparation details? Specifically what does your donor Poop into? Do you use something to break it down into a liquid?....walk us through it

Wow, FamilyofLyme, that must be so hard, to have everyone in your family have Lyme. I can't even imagine...

Thanks for the info about the Cowden protocol. I'd heard of it, but I've never tried it. I wonder if it can be done with the Buhner protocol. I do think there's something to "pulsing" to get the bacteria to un-encyst. So far, the Buhner herbs are working well for me, but I still think candida is a concern. Plus I know better than to rule out the possibility of Lyme rearing its ugly head by now.

I will check out that website you mentioned. I would love to take fewer pills and I am definitely interested in getting rid of some of the prescription medications. I've moved in that direction before using neurofeedback and right now I am trying to learn how to do that myself so I can have access to frequent treatments while trying to go off the meds.

Hi bdoc, sure, I will tell you the gory details from my end. But you would probably be more interested to hear details from LymeAssistant. I believe he is going to post a reply for you, too.

Hmm...the gory details. Well, usually LymeAssistant puts the liquified poop into the empty enema bottles for me (he's such a gentleman). I'll usually do it in the bathroom because the floor is hard and if there are any spills they're easier to clean up. And I'm such a klutz that there are bound to be spills.

I put a towel on the floor to make it more comfortable. If you do this, make sure it's a towel you don't care about. One downside to this is the towel can slide around- this isn't fun if you have balance and coordination difficulties. Be careful! Or just use bathmats instead.

I always have a package of those baby-wipes-for-adults. I leave the toilet seat up so I can throw them in if necessary. As for my pre-FMT set-up, I usually put Vicks vaporub under my nose (it helps block the smell) and put the bottle of lubricant on the floor where it's easy to reach. Then I lay on my left side, insert the bottle tip and squeeze as much of the contents in as possible. Typically, I'll have more than one bottle. So I immediately do the same with the next bottle. Then I lay on the floor until I feel like getting up. As long as I'm on the floor, I don't feel a strong urge to use the toilet. If I stand up, though, that urge will get stronger the longer I'm standing. So I just clean up and then go to bed.

I have never had a leak in my sleep, but I am paranoid, so I line my undies with as many pads as humanly possible and then sleep in shorts.

This is all so incredibly fascinating!!! I have a dear friend that is a veterinarian and has been following my Lyme/Bart treatment since I was first diagnosed. He is very progressive and asked me if I had ever considered fecal transplant. I had no idea what he was talking about. Apparently it is used in veterinary medicine as well. I googled it and found your posts. THANK YOU SO MUCH FOR SHARING! I know it's very personal but it could have the potential to help all of us. Please keep us updated on your progress!

LOL! You're not alone in that, Simela!! IF and that's a big if, my hubby agreed to it, he wouldn't volunteer to do any of the work involved! I'd have to find another donor and just not talk about it!

And when I first saw the email notice for this, I thought it said facial transplant! LOL! Wrong end!!! I think my need for coffee (the REAL stuff) is now evident.

I'm very glad that this thread was started as it shows others more options to help themselves when all else has been exhausted, or they are just that severe.