Fecal transplant and MAH...

Hey everyone -

So I had another doctor visit that ended (or pretty much started) in tears.
I've been at my treatment for over a year and I'm not making the progress we think I should be...basically symptoms wax and wane and there doesn't seem to be much rhyme or reason which is really frustrating.

I'm feeling almost betrayed by my doctor at this point. I like her and the staff a lot, and I believe the treatments work well - I just think the problem lies in the way they're administered. There's no real treatment plan - a lot of chaos. One week we're treating this and one week it's that and I think the lack of consistency, along with severely undertreating the lyme with too low of doses of herbs has been a big factor in this - and I feel like she should have been doing a better job all along. I'M the one who pointed out that it's relevant that I only get bee venom once every 3 weeks-a month - she's like "good point - my other patients do come much more frequently..." ...I kinda feel like she should have been on top of that?

At one point she told me not to take immune modulating drugs for my possible crohn's because she believed it was caused not by autoimmune issues but by my body (correctly) attacking one of the bacteria or toxins in my gut...then my last appointment she's like yeah go on them if x y z doesn't work. I feel blindsided. I feel like she says different things at each appointment and on top of it she's always forgetting everything - I don't know how many times she's asked me if I've tried this or that (shouldn't she WRITE IT DOWN?) or how many times she's just flat out told me she doesn't remember one of the symptoms we've been trying to deal with for months. It's concerning to say the least.

So I'm going to try to go in a different direction - a naturopath and I found an energy healer nearby. I'm still going to go to her I think, but maybe not so much for the lyme. She wants to do a fecal transplant for my gut issues and/or MAH - forget what it stands for but they remove a pint of blood, mix it with ozone and put it back so your blood is more oxygenated.

I think I'm gonna start with the fecal transplant because it should help sooner and probably be less stressful for me - I just can't believe when I found out about fecal transplants in February I was SO GROSSED OUT BY IT and now it's just a common place idea and I'm actually looking forward to it. Crazy stuff!

It's not so much the forgetfulness that bothers me but rather the fact that she makes her treatment decisions based on incorrect memories of what diseases I have what treatments I've tried what my worst symptoms are etc. I do a lot of treatments when I go an it's hours away and I'll push for injections in my back because it's my biggest priority and she'll push for injections into a new e ganglion for my bladder pain, one of my lowest priority symptoms.

Crohns, I don't know. I don't have typical symptoms... Mostly bloating and pain, but the pain may be muscular or related to pelvic scar tissue... The colonoscopy did show ulceration, and one of the blood tests was indicative but diagnostic of crohns... So I'm not sure if I even believe I have it.

I've heard good things about fecal transplant so I figure I might as well. They do it much cheaper than other places too because they have a ridiculously healthy donor working there. I might find it weird if I hadn't already done rectal ozone! Yikes.

Fecal transplant are highly successful for C. Diff. The success rate goes down for other diseases of the bowel, although they can help some.

No hospital or doctor will perform a fecal transplant for anything other than C. Diff.

Unfortunately, that means you would have to do it yourself.

Optimally, it would be better if performed by a doctor.

Margaret

Best of luck, Borderlyme. I think you know enough to know that Lyme does affect the immune system, and is often misdiagnosed as autoimmune issues due to the inflammation and other markers that it raises - so do your homework and let us know how you do.

Eliz, in order for Borderlyme to email you, you need to enable your email. You can do this through your profile.

P - there was another member who was doing the transplants...did you know about her?

Maybe a search will find her thread.

Ahh - thanks so much Girlie. I did post on that thread but have no recollection of posting or the conversation, of course... My post was from awhile back but I have recently been looking much more seriously into the whole transplant process so it's great to read this conversation again. This time I'm going to bookmark it.

-p

OK - glad you're taking a break. It's good to step back and re-evaluate. Let us know how you're doing.

I decided to do the transplant a couple months ago, based on some really great info I was reading. Have to wait until I'm done with treatment, though so that gives me time to get all my ducks in a row. I think finding the right donor is the key challenge.

-p

bluelyme -

From what I've read, a lot of people are having success by doing a very simple fecal transfer via enema. But I've also read that for people who have upper GI issues (me), this would not be the best approach so I'd have an MD insert the sample through a tube inserted through my nostril or mouth---or hopefully by the time I'm ready for all this, I can simply swallow pills.

My nurse who was here the other day to access my IV shared that one of her immune-compromised patients is also an MD and has a bacterial infection that is damaging her kidneys. She is doing FMT by swallowing coated capsules filled with dried fecal matter. She's going to try to find out more about her sample source.

I also want to explore BVT but I need to find a service. I couldn't possibly manage a small bee colony and give myself stings. I just don't have the energy or desire or space.

I did a fry test awhile back and "something unidentifiable" was found so my LLMD is treating it as bart so I'm on vancomycin for bart. I'm also going to start taking Byron White A-bart again when I generate some courage. It caused unbearable GI attacks the I was using it before (which is why I started the vanco) and the last one I had took me a month to recover from--I don't think I'll live through another one.

-p

Such great info! Nothing to add but support and kind thoughts.

eliz---will do!

BTW -
This openbiome.org company does this - they screen donors and create coated capsules for transplant. My understanding is that they only work w/ MDs and researchers at this time--but it's interesting to read about them.

www.openbiome.org