Now onto glycopyrrolate

DebE13 · Post by **DebE13** » Mon Nov 06, 2017 11:50 am

My two week trial of doxycycline was a fail. It did not produce Norman, even slightly. All I can think of is it was a fluke or my body was so distracted by the real threat of the bacteria caused by lymes that I forgot I had MC. I continue to make 3-7 trips to the bathroom each day with 4-6 being the norm. Interestingly enough, it has shifted from primarily mornings to most often late at night and wee early morning. Not so good for sleeping.

My GI now wants me to try robinul (may or may not have spelled it correctly). The generic is glycopyrrolate. The pharmacy filled it so I am assuming it does not interact with LDN like to lotomil did. I noticed I felt much worse when I stopped the LDN so I don't plan on doing that again.

I don't care for this endless road of drugs that are doing nothing to improve my situation and do nothing to improve the cause. I am still intrigued with fecal transplants but am hung up on the fact that my husband is overweight (beer belly). If it wasn't for that we would have pretty similar body types and he is willing to do whatever it takes to help me be better. I also should do the pathogen testing even though he is as healthy as a horse and takes no medications. I suppose it would be irresponsible and potentially life threatening to skip it. I should fast track my research because as gross as it may sound, it actually doesn't seem that bad of an option. I know my husband and his habits and am grateful he didn't even think twice about offering to help. Now I just need to make up my mind.

Erica P-G · Post by **Erica P-G** » Mon Nov 06, 2017 5:34 pm

We never know what works until we do it ;-)

Don't fear something that your intuition says you should try.....that sixth sense gives strange answers sometimes, lol.

I wish you the best in what ever you decide!
E

DebE13 · Post by **DebE13** » Tue Nov 07, 2017 12:16 pm

Thanks Erica, I just don't want to do anything with good intent that could potentially cause additional issues. I've done that in the past. I just need to take the time to do my research.

So far, the new pills are making me tired, causing mild headache, and twinges of lower abdominal cramps with no noticeable benefit. It's too early to tell. I am sticking with it for now because I realize sometimes the bidy just needs to adjust but it does come with a warning that it can cause dizziness, tiredness, and blurred vision. I am around too much equipment to risk being at work in a daze.

sunny · Post by **sunny** » Tue Nov 07, 2017 2:27 pm

Deb,
Back when I had my fecal transplant after a 6 month struggle with Cdiff in 2013, I was considering using a donation from my then 18 year old grandson....he was so worried about me he came over to offer his " gift!" We were able laugh about it and actually considered it...read articles about DIY efforts ...and en found a doctor who performed them....

The main thing would be if your hubbie eats gluten....or any foods you react to...I've read research that they've found some overweight donors can change the metabolism of the recipient....

But with the FDA refusing to allow the transplants for anything but Cdiff our hands are tied...
Leaving the home transplant the only recourse for some...
Sunny

DebE13 · Post by **DebE13** » Wed Nov 08, 2017 9:15 am

Sunny, so it worked for the c-diff but not your MC?

I've read about the weight gain too which sort of makes me apprehensive. He has no dietary restrictions and I would not ask him change his diet because I have so many limitations- it would seem so be asking a lot of someone who is already trying to be helpful. I read an article that a healthy person should have digested/processed and their diet shouldn't pose a problem. I suppose there really isn't enough research/info out there to really know how it may effect different individuals.

The robinul is not agreeing with me and I'm not sure if I should just stop taking it or give it a little longer.

sunny · Post by **sunny** » Wed Nov 08, 2017 10:34 pm

Deb....yes, it worked for Cdiff but LC seems to be lurking always...
there's a post on DIY transplant today with a great link that may have more info you can use.....
Sunny

DebE13 · Post by **DebE13** » Sat Nov 11, 2017 5:37 am

Sunny where is the link you are referring to?

The side effects of the Robinul were too much after four days. I stopped taking it. I messaged my GI and the nurse said I should have noticed some improvement by now and the side effects are commmon. She agreed that I should stop taking it. I received a call later and my GI wants me to take one pill before bed to see if we can lessen the side effects and follow it with an immodium in the morning. I reminded her that immodium has never worked for me and causes gut cramping. I'm supposed to give it a try for a week.

This is trial #10 in a relatively short period of time..... now I remember why I gave up trying to find an answer with my GI so many years ago. I know it's not his fault and he'd love it as much as me to find something that works. I did a quick peek at my rx history and just shook my head-

budesonide, lialda, cholestyramine, doxycycline, oregano oil, metronidazole, atrantil, xifaxin, diphenoxylate/atropine, glycopyrrolate........

I don't quite understand how one robinul will work when two/day did not but I agreed to try. Thinking I will just message you back in a week and let you know it didn't work. Additionally, I'm stuck on actually stopping the diarrhea not just slowing it down. Long term, even it if did work at some level, is not going to be a good plan. I suppose they have no clue what to do since I am not improving in the least with anything so far. The gut microbiome or lack thereof is looking like the most sensible reason why nothing in helping.