Heebie-jeebies, general vent.

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
christos
Regular User
Posts: 42
Joined: Mon Nov 14, 2016 8:47 pm

Heebie-jeebies, general vent.

Postby christos » Sun May 07, 2017 8:48 pm

I visited my ID, and my symptoms worsened, with new abdominal pains and worse standard symptoms.

The long and the short of it is, that in his opinion based on what I told him and my symptoms/positive test, I still had CDIFF and needed to treat. But he ultimately left the decision up to me. The way we both saw it is that he nor the GP could treat my symptoms in my current state of what we called "limbo", but that if I took the treatment one of two things would happen:

1. I would get better, and I would never have to see him again.
2. I would get worse or stay the same, and he would be in a better position to treat me better.
(why? - if I fail the taper, he can actually give me dificid, whereas without failing there's no grounds for him to legally give it to me as I technically only had one round of treatment - we also talked about GI referral and he said because my symptoms are comparatively "mild" that the Vancouver GI Specialist he frequently refers to and chats to will reject my referral - I trust him on this commentary)

So I went dark on this forum, to clear my head and try come up with my own decision, and I decided to treat on the prescribed 1 month taper.

The first week I improved immensely - all the way up to week 3, but now week 4 I'm starting to get rough again.

Meanwhile, my GP has sent my for numerous blood tests on elevated liver enzymes and checking for hepatitis other indicators. I also got a liver/spleen ultrasound for fatty liver, both of which we're still waiting on results. I'm hoping that the elevated liver enzymes are just a result of cdiff/treatment, as I've found this seems to be a common thing on here.

My ID is also a liver specialist - so as soon as my GP gets my blood tests / liver results - if bad - I'm going to ping my ID and let him know. Who knows if we made the right call on treatment, I tried GP guided natural alternatives to ABx with both the GP and my ID and both times I had no improvement. I know a some of you on here would say it was the wrong decision, but I'm siding with my ID in that if I really am failing again we have more grounds to start doing more serious testing & treatment like colonoscopies/dificid/FMTs and ruling out other issues.

As previously mentioned, the only good news is that my retina specialist and ophthalmologist said my eyes are good with no uvetis, and before I went to the retina specialist I was convinced I was going to be told I had serious eye problems. I'm focusing on that fact to help me deal with my anxiety over all this.

Anyways, I posted because I've been to so many specialists recently, and had so many tests that it's all giving me the heebie-jeebies and I really have no one else to talk to about it and needed to let it out. I don't know what I want to hear from you guys. Thanks for listening(reading hahaha).

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Heebie-jeebies, general vent.

Postby amyc » Sun May 07, 2017 11:29 pm

I think treating was the right idea, especially since you improved so much that first week. The improvement shows that your symptoms came from C diff and not a different disorder, in my opinion. I never did a taper, but I think I have read that lots of people struggled the last week but then got better? Hopefully that will happen for you.

beth22
Long Time Contributor
Posts: 9448
Joined: Tue Apr 07, 2009 2:23 pm

Re: Heebie-jeebies, general vent.

Postby beth22 » Mon May 08, 2017 1:36 am

What you experienced with the vanco is what would happen to me. It would help me the first week and then the longer I took it, the more good bacteria it must have wiped out and I would start to get pain, etc. I would not worry about it and just think positively - that the vanco did its job and that you will be well. If not, there is always Dificid or FMT. Just take one day at a time. I find that if I think too much into the future and the "what ifs" my anxiety goes through the roof!

roy
Long Time Contributor
Posts: 3293
Joined: Sat Aug 02, 2014 1:05 am

Re: Heebie-jeebies, general vent.

Postby roy » Mon May 08, 2017 4:21 am

One strange thing your Dr said.
Dificid is actually designed to be prescribed as the first med to be given for c.diff. There's NO rules saying you have to relapse before it can be prescribed!

amg
Regular Contributor
Posts: 271
Joined: Sat Oct 01, 2016 3:16 pm

Re: Heebie-jeebies, general vent.

Postby amg » Mon May 08, 2017 11:49 am

I was thinking the same thing, roy. But christos mentioned Vancouver, so maybe there's a rule in Canada with their nationalized health program?

Christos - try to hang in there and think positively. Dificid is an excellent option you can go to next. It cured my daughter after multiple relapses on Vanco and Flagyl, and it's worked for many on this site. You will beat this! We're pulling for you. Be strong.

christos
Regular User
Posts: 42
Joined: Mon Nov 14, 2016 8:47 pm

Re: Heebie-jeebies, general vent.

Postby christos » Mon May 08, 2017 3:08 pm

Sorry my wording is a bit off - I should have included that the only way that Dificid is covered here in BC is if you fail 2 rounds+ of vanco and/or are severe with multiple severe indicators, also, the request for coverage has to come through an ID with a special form. They can legally prescribe it to you - it's just not covered at a cost of $1400. In an ideal world treatment would have been done with Dificid and this would have all been resolved I think America is ahead of B.C. Canada on this one!

Thanks for the kind words guys it really helps a lot and I mean it. Sometimes I feel like I'm going crazy ive almost hit the 6 month mark. Was fairly positive but I just feel like I been having a rough week - Each individual has thier own unique CDIFF journey! Will keep you all posted! :D

christos
Regular User
Posts: 42
Joined: Mon Nov 14, 2016 8:47 pm

Re: Heebie-jeebies, general vent.

Postby christos » Tue Jun 13, 2017 11:16 pm

Ok....

So out of no where, my liver levels are at 40 down from the previous 170s - great news.
My WBC count is low @ 5 - strong as an ox.
My Vitamin D levels are so low, that my ID wants me to take 2 months worth of vitamin D 10,000 units/day - funniest thing I've heard, bloody Canada.

My CDIFF test is still positive, and I still have very mild symptoms. no fever, mild bi-lateral 'discomfort', loose Bristol 4's, and varying levels of mucus.

My ID tells me that he doesn't feel comfortable treating mild CDIFF like this with ABx because I'm "not dying". (fair.) So didn't give me a Dificid prescription. Can't call it PI-IBS because of positive test, cannot call it Chrons/UC due to lack of blood/severity and because of positive test.

Refers me to ANOTHER ID, the guy that specializes in FMT. In particular, this FMT specialist is the only in Vanocuver who is performing all trials related to CDIFF including FMT and RBX2660 Enema. To determine whether I need to get one done.....

I don't know anymore.... might need to turn to "natural medicine" while I wait for the supposed 2 month waiting list. Praying it will go on it's own.

For what it's worth I started taking Bacillus Coagulans, and that has improved my symptoms a little, much better than anything else has so far.

georgina
Long Time Contributor
Posts: 2212
Joined: Sat Sep 12, 2015 10:07 am

Re: Heebie-jeebies, general vent.

Postby georgina » Wed Jun 14, 2017 12:51 am

It seems that your body is fighting the disease on it's own. If the infection is low-grade you can test positive but with very mild symptoms as yours (there are IBS cases that are more severe than your Cdiff case). I am also testing positive for toxin A only since last summer and nothing had gone full blown and I feel comfortable with the way I am right now ,no D , just 1-2 soft movements , mild discomfort ,not keeping a diet anymore. Doubt that new doc will wanna perform FMT with your symptoms , but good luck and keep us posted.

roy
Long Time Contributor
Posts: 3293
Joined: Sat Aug 02, 2014 1:05 am

Re: Heebie-jeebies, general vent.

Postby roy » Wed Jun 14, 2017 7:06 am

A positive test is a normal test if you don't have classic symptoms.
It means your body is dealing with c.diff in exactly the way it's designed to do.
It's immunity!


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 2 guests