1 year of hell...

[Bryan30]

I have spent quite a bit of time reading posts on here before I finally decided to write. It's truly beautiful seeing people come together like this to support one another and lift each other up. You're good people.

Here goes...

I am a 34 year old athlete. I have a beautiful wife, and two beautiful children. One day I came home from work with chills, and loss of appetite. This went on for a week which then turned into upper left pain under rib and left shoulder blade pain.No diarrhea, just bloating and pain...After 5 trips to ER, 6 days in hospital... I was told that I had IBS. 2 negative abdominal CT, Ultrasound, Blood Tests (Every Test Imaginable), Endoscopy, Coonoscopy... Everything Negative... I begged them to do a stool test and they said "no need because I had not traveled".. Finally they administered ova/parasite and I was confirmed positive Giardia.

This is where it gets interesting... They decide Flagyl is the route to go and the first night was IV. I felt a tight bear hug around my chest like I couldn't take deep breathe.. the doctor said flagyl doesn't do that and to continue. I was released for home and given 16 days of metronidazole. The 2nd day of treatment my ears started ringing and headaches started. Doctor told me to continue and it was more than likely parasite for off.

16 days later, I was experiencing visual, sound sensitivity...constant headache... tremors, muscle weakness, numbness in hands and feet.

6 months went by, I struggled and pushed myself to keep going to gym and fight was they called anxiety and stress. I finally 8 months after flagyl talked my doctor into stool test which revealed C-diff positive toxins.

8 months it never caused diarrhea, just the fatigue and still the upper left pain. I refused flagyl because of its side effects I have not recovered from in a year. I was given 10 days of vanco. I started feeling better but then 10 days ended. I started to feel constant nausea, no appetite, still upper left pain... constant loose bowel movements...They would not test me again to make sure it was gone.

Finally the day before Good Friday (1 year to the day from giardia and flagyl treatment) my doctor gave me a stool test. Positive for c-diff again. 1 year it has been wrecking my body. The doctor then gave me another 10 days of vanco, and also ordered MRI of abdominal with contrast to see if there was any damage. MRI was normal.

Today I fight constant muscle fatigue and endurance, loose movements and mud like stool, nausea, upper pain, and even reflux. I never had one issue before C-diff. My GI appointment is Wednesday, I am praying to god I can get this taken care of. It's been a rough year. I know this is a long read. It's been a long year. I look to my family, and god to lift me up.

I've learned to listen to my body. If I hadn't pushed, IBS would have been the diagnosis. I justvwish I would have stopped flagyl. I'm afraid it permanently ruined my nervous system.

[amyc]

Awful story. I am so sorry your serious neurological reaction to flagyl was called "die off," which is a non-scientific creation of the alternative medicine community that has now been embraced by mainstream practicioners. It seems absolutely insane that doctors push expensive and invasive tests like scopes and contrast MRI exams instead of just ordering comprehensive stool panels, but we have seen many posters here who have experienced months of the same. A cynical person would think an awful lot of doctors are padding their pocketbooks.

Not all people experience the classic symptom of explosive D with C diff. If your symptoms don't improve I would recommend firmly requesting Dificid treatment, and a few people here can provide links to research articles that explain Dificid tapers they have used to become cured when vanco treatment failed.

[Bobbie]

We welcome to the site, Bryan. Please read the first forum that gives the history of the site and the rules of posting.

You really have suffered a year of hell. Your story illustrates how complicated and difficult to treat c diff can be. Although diarrhea is usually one of the first symptoms , we have had multiple cases where it is nit not present. We have had many. nurses and several docs who had c diff and posted their frustration about it on the site.

It sounds as tho you are recovering. Kudos on being an advocate for yourself.

Yes, Flagyl,can be a nightmare, and many have side effects from it. Fortunately, they usually improve with time.

I am glad you have continued to help yourself with exercise, if it weren't for exercise, I think I would have died, I am 76 and have taken Jazzercise for 26 years. It did not "cure" my c diff but it kept me moving.

Wash your hands often and thoroughly, wash your clothes separately from the others in your family - especially your towels. Buy white towels,so you can bleach them. I would use a separate bathroom if you have one. Very few have passed the infection to others in the family, however, but take what precautions you can.

Again, welcome. I am sure others will post a welcome to you soon. I am so glad you have a supportive family. Slowly, you will return to normal.

All our best wishes.

[NanciT]

Bryan

Another WELOCME to the site. Sorry for all you have been through, we hear again and again MD's do not test for CDIFF. My story started with my first GI missing it totally. It is so very upsetting.
Sounds like you are on the right tract seeing the GI. If symptoms persist, ask for Dificid. Take a look at the thread "CDIFF INFO" before you go. Also look up Dificid on the site in the search bar.

Good luck with your appointment!

NanciT

[Bryan30]

Thank you all so much. It was very uplifting to see replies so quickly. God has truly blessed me with a wife whom after 10 years is still my rock and best friend, but I feel bad always talking to her about it. I guess I just find myself frustrated with Dr's because I cannot believe how little they know about this infection. I was given a stool test 5 days after finishing vanco and tested negative. I told the Dr "I honestly feel the exact same as I did the day I tested positive"... after vanco ended I lost gained ground. I then asked him about the taper. He said "let's put you on Donnatol and wait a month to see if symptoms improve... I get absolutely no relief from any antispasmodic or PPI. I just wish they would treat by symptom and not tests... or at least give me multiple stool tests... it's unbelievable. This has been such an eye opener. My heart breaks for anyone labeled IBS just because a DR won't push to find out what is wrong.

[JohnnyCC]

Hi Bryan30,

Regarding to your comment "8 months it never caused diarrhea, just the fatigue and still the upper left pain.", did your Dr. happen to test you for H. Pyroli? I also saw you did Endoscopy, that normally would test H. Pyroli. Just wonder if this could be one of the problem too as H. Pyroli could cause the stomach acid issue, heartburn and upper left pain.

[Bryan30]

Actually, the endoscopy was done in the hospital before giardia was diagnosed. At that time I was negative for everything including biospsy from endoscopy. Would it be possibly H pylori was an issue after c-diff?

[JohnnyCC]

If that was being tested during endoscopy tests, then that could be ruled out.

I had those upper left chest pain symptoms and heartburn etc....after a breath test in the lab, it was detected with H. Pylori. I took antibiotics to treat H. Pylori which gave me C. Diff :-(

Hope you will get well soon.

[Bryan30]

Just wanted to update... I went to GI appointment this morning. I told him if the pain and issues and he wants to order an EUS. I asked "could you humor me and please order a stool test?... I know the last one was negative but I don't feel different at all..." he responded "those tests are very accurate... 98%... it's very unlikely but I'll order it to give you peace of mind. Yea, I took the stool test this morning... they just called back and said I'm positive... I will not accept 10 days of vanco.... I will tell them I want the taper. Listen to your heart, listen to your body. I knew it in my heart.

[amg]

Good for you, advocating for yourself!

After this long, and after multiple relapses, you could also ask about Dificid taper.

[beth22]

If I were you, I would take Dificid. It does not kill as much of your good flora as vancomycin.

[georgina]

Another vote for Dificid , a long course of Dificid might be your magic bullet after all those relapses.

[NanciT]

Go with a DIficid taper, it has worked for so many including myself. Push for it, being your own advocate in this specific illness is often necessary!

Keep us updated!

NanciT

[Bobbie]

Another vote for Dificid. Discuss it with your doctor.

[Ril]

Try for Difficid....it will take less time for your gut to replenish your good flora from the other treatment because no more will be killed off.
And take probiotics now!

Rita