Jill 37/f New to C. Diff

[amyc]

You had the old toxin test that tests for toxinA/B, so the odds of that one being false positive are low. Since it's a mild case I agree with your doctor that you have a great chance to beat it with flagyl. If you relapse after finishing treatment you can request the liquid vanco, which your pharmacist mixes for you and has to be kept in the fridge. It is much cheaper. You doctor does sound like a good one, and even though it's unlikely your mom and you are sharing C diff, don't tell her that haha. She is 73, has diabetes, and pain with D. She needs to go see her doctor to address her own health. Worrying she could have this infection should encourage her to keep that appointment.

[Jill79]

Thank you again Roy & Amy.

Amy - I too hope since I've been blessed with what seems like a milder case that I'm able to beat it after one round. I feel so bad for those of you battling this for months and years with relapses, etc. and the little voice in the back of my head keeps worrying that this just may be the beginning for me, but I'm working with my therapist via phone to keep a positive outlook and take things one day at a time. Sometimes I'm not sure what's worse, the anxiety or the illness.

The Flagyl is harsh, on day 6 now, 8 more to go. I always seem to feel worse in the morning and early afternoon hours when I'm trying to get some rest after being up late the night before since that's when I feel the best with only some dull abdominal pain. I try to nap and end up waking almost every hour either to pee or with what feels like nausea pangs, heart palps, waves of anxiety, can't pinpoint exactly what the feeling is. Peeing a lot but trying to keep hydrated, still on a bland BRAT or BART diet with some mashed or baked potato, yogurt with live cultures and I seem to crave a late snack of a handful of pretzels most nights. Drinking mostly water with the occasional sip of ginger ale since I know the carbonation can and probably does cause me gas pains but I just can't drink it flat. Yuck. Saw a post about Sea Bands and picked those up for the nausea. (NancyT maybe? - Thank you!)

I'm still uncertain about a probiotic. My PD suggested Align x1 daily and the GI's office said Florastor 2 x 2 daily. My b/f picked some up Align yesterday, I took 1 with dinner, but after scouring this site and the internet, I'm thinking I should start the Florastor instead? I'm just concerned that 4 pills a day vs 1 will make me feel worse somehow, mainly nauseated, but that's the anxiety kicking in. The Align looks as if it is a bacteria that helps more with IBS and gets killed off with the Flagyl as the Florastor is a yeast that will survive the treatment and may (I stress the word may) help prevent a relapse? I've read some can't tolerate the Florastor, I'm wondering in what ways?

Mom finally went to her PD today. He gave her a stool kit, form for blood work and advised her to see a GI as well as have a colonoscopy which she should have had for the second time years ago. She complained a lot and feels inconvenienced to have to go through all of this but she has always been there for me whenever I needed her, especially recently. Retired, homebody, hard time getting around, etc. etc. and a procrastinator. Lives by Scarlett O'Hara's "I'll think about it tomorrow."

Roy - I understand about retesting but I want to follow the instruction of my doctor. Even the minute chance I could test negative after treatment would give me additional peace of mind. It's just hard to gauge my recovery due to the lack of WD, M or B and frequency. Obviously if I stop experiencing the abdominal pain, my movements improve in formation and I generally feel better as a whole, I will also feel better mentally and return to work, life, etc.

I'm also becoming more confident that my Mother is experiencing her D from other sources (medication, diabetes, diet) but as I mentioned her PD advised she be tested. Thank you for correcting me on what test was performed. Definitely EIA that detected A&B toxins.

Best wishes and hoping you are both well,

Jill

[amyc]

Hi Jill. I'm glad your mom went to the doctor! My mom is about that age and a retired RN, and she has never had a colonoscopy. She is in good health, so what can I say? I couldn't stand florastor because it made me super gassy, but lots of people here haven't had any problems with it. I would start with one, and I wouldn't take it if you are going to be around lots of other people for a few hours? Align never bothered me.

Your flagyl side effects sound like they are intensifying over the past couple of days, which doesn't mean it's dangerous, but pretty unpleasant. You could call your primary care doc to let them know that, and they might want to make the switch. At least you would be getting it into your record that flagyl isn't your friend.

[Jill79]

Hi Amy,

I'm glad she went too, I just hope she follows through with everything. Happy to hear your mother is in good health. I can understand not fixing something unless it's broke and even not wanting to know if something is going on. I had a baseline mammogram a few months ago because my maternal grandmother died of breast cancer before I was born and my mother hasn't had a mammo in years. They found two areas of concern, performed additional films and an ultrasound the next day but advised since it was my very first time, my young age, and believed what they saw looked benign, to follow up with another mammo 6 months later (October) to see if there was any change before performing a biopsy. My OBGYN agreed with that course of action as well.

I'll start with one Florastor tonight and see how it goes. Passing gas doesn't bother me and I'll only be home so let er rip. :) I was more concerned with nausea since I've been emetophobic since I was young, and yes that attributes a lot to my anxiety.

I may have worded things wrong, but what I've experienced with the Flagyl has been the same since I started. I don't feel the side effects are intensifying, they're just uncomfortable but so is C. Diff. I feel if I've made it this far to continue on and ride it out. If things do get worse or I simply can't tolerate it, could switching possibly affect the outcome of the treatment?

[amyc]

I don't think switching would cause treatment failure, because doctors seem to switch people all the time.

[Jill79]

The night before last I felt really good, had more of an appetite and didn't wake up yesterday with the full body chills and sweats as I had previously. In fact the morning before was probably the worst full body sweat I've ever experienced thus far and it was a relief to wake up without it yesterday. I also produced my first soft but formed BM yesterday morning so I was happy about that and it was my only BM of the day.

Later in the afternoon I started experiencing dizziness and nausea so I took a zofran dissolve. The dizziness & eye sensitivity to light seemed to get worse so I initially blamed it on the zofran. It has only let up slightly today and even though I didn't have the bad chills and sweats, I was back to loose, unformed BMs this morning. :(

I had also started Florastor two days ago (1 capsule twice daily to see how I tolerated it) and noticed a slight feminine itch and read that it could cause dizziness if you had a yeast allergy. I decided to not take it today to see if I feel better.

On a side note and probably ridiculous notion, after I noticed some dry, scaly patches on the back of my hands a few days ago, most likely from the first day or two of cleaning without gloves and all the hand washing, I bought a milder hand soap and an intensive care lotion. I read the ingredients and saw that the hand lotion contains some forms of alcohol, which I understand is topical and a long shot, but I had to give up my e-cigs (vaping) due to the propylene glycol content to avoid feeling sicker with the Flagyl. (Which is a good thing I know.)

I'm on my 9th day of Flagyl and wondered if my side effects could just be getting worse with the dizziness and eye sensitivity or if they may have been exacerbated by the Florastor and / or lotion? Obviously if I continue to feel worse and the dizziness doesn't let up I'll be calling the doctor.

My diet was actually identical both days due to my Flagyl schedule and leftovers for dinner so I'm a little deflated in the irregularity of my BMs since it's hard for me to gauge improvement with no WD.

[ResearchGrandma]

Flagyl is a horrible drug, and could be causing your symptoms. In case I had forgotten what it was like from my C. diff experience, I had to take it for dental issues earlier this year, and had the tiredness, loss of appetite, balance/dizziness issues. The symptoms persisted for a full 3 days after I stopped the flagyl. You could call your doctor and asked to be switched to vancomycin (either capsules if you have good insurance or ask for the IV powder to be made into a suspension if you are concerned about cost). Most people tolerate vancomycin much better than flagyl.

[Jill79]

Thank you Research Grandma. I will definitely look into switching if the dizziness worsens or I experience any other severe symptoms that I simply cannot tolerate.

I'm actually surprised how well I've tolerated the Flagyl these past 9+ days, even with my anxious concerns and / or complaints, I'm not always sure if I should blame the Flagyl for everything I feel.

- Had a moderate behind one eye headache the other day but it subsided with 2 Tylenol, 1 Xanax and some rest. Had similar headaches all my life.
- Sore shoulder and neck muscles last night, neck was better this morning and shoulders improved as today went on and could have been attributed to my posture, sleeping position and even anxiety causing me to tense up, etc.
- Frequent urination since the beginning, but I'm drinking a ton of water and I've read that it's a minor side effect. The color can be darker (no blood) but lightens during the day as I re-hydrate.
- So right now I'm just dealing with some dizziness and light sensitivity from moving or looking in a different direction too quickly that seems less than yesterday and some mild pain / heaviness behind my eyes (maybe this can be the "brain fog" I've been reading about) but my sleep hasn't been superb with me remembering all of my dreams, some disturbing, and I know my significant other and mother have been dealing with allergies so it's hard for me to blame everything on the medication. It's also been between 90-100 degrees here so even the A/C has a hard time keeping up as of lately.

I have regained a little more of an appetite and had the short lived success yesterday of a formed movement, so I'm going to see how I feel tonight into tomorrow. I would really like to finish this round of Flagyl since I've made it this far, and even though Amy stated that switching may not effect the success of my treatment, my anxiety brain kicks in and worries that it might.

On the plus side, I did call my prescription carrier who advised the cost of even the tablets of Vancomycin will not break me. I will say that if the Flagyl doesn't work or I relapse I will ask for the Vanco instead.

[Jill79]

So I was hoping to post a success story due to what seemed to be a mild case caught early, improvement post Flagyl and even the great consult with my GI a week and 1/2 ago, but unfortunately the past 4-5 days I've been going downhill with severe cramping, tenderness, bloating, nausea and lack of appetite. By today I had all the symptoms I had prior to my first positive test including chills & sweats with the exception of W/D or D.

Coincidentally I retested yesterday (17 days post Flagyl) with another positive toxin test confirmed today. :( I will starting 10 days of Vanco tomorrow night since my pharmacy doesn't have it in stock, ugh, continuing the VSL 3 I started after my GI appt. and hopefully that will finally do the trick.

I know the lack of W/D and retest may be a point of contention with some of you, but if I wasn't feeling this horrible, progressively getting worse and similar to where I began, I would have questioned and most likely refused further treatment.

Does anyone know if I need to stagger the times I take Vanco and VSL 3? I've currently been taking the VSL 3 with dinner.

Oh well, here we go again...

[beth22]

Yes, take the probiotic in between doses of the vanco or the vanco will kill the bacteria it contains. Sorry that you have relapsed again. I did not have the classic D either, so I can understand what you are saying.

[Jill79]

Thank you Beth :)

[amyc]

I relapsed after flagyl and was cured by a course of vancomycin, so don't panic :). I know that's impossible right now, but it does happen. Nobody will criticize you for treating an obvious relapse, which is what you are dealing with.

[Lisa33]

Just like Amy, I was cured by one round of Vanco after relapsing after Flagyl. So don't be discouraged. This round can very well do the trick!

[Jill79]

Thank you Lisa and Amy! Your responses really do give me more hope and reassurance! :)

I just can't help wondering if I did something wrong (cleaning, etc - I'm getting afraid to touch anything again) but I'm assuming most relapses are cases that aren't cured the first time around?

Please let me know if this thread gets too long, I felt a reply was better than a new post.

[georgina]

Jill don't get discouraged , you can be cured from the first or even the second round of meds , and stop blaming yourself , it's not you (the cleaning etc) , it's just the nature of Cdiff , it's a stubborn bacteria and sometimes it just won't leave. Hopefully this round of vanco will do the trick!