syptoms and side effects

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Jimmy34
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syptoms and side effects

Postby Jimmy34 » Sun Jan 31, 2016 10:06 am

Hello,
My name is Jimmy. I am 39 years old.
I have had c diff since 12/29/15. Doctors believe
I got it from amox/clav for a upper respiratory infection.
They put me on a 10 day 3 times a day of Flagyl. Few days later
The c diff had returned. I had a some side effects from the flagyl
So the doctor put me on a new antibiotic called fidaxomicin.
Had no side effects. Few days later c diff syptoms returned. My
Doctor sent me to see a gastrologist. He ordered a second stole sample. My doctor also perscribed another perscription for
vancomycin this time a 14 day cycle. I started taking on 1/29/16. Last night I started getting gas pains and pain in my lower back. I
Am still having diarrhea. Lab results from the stool sample should return in 2 days. I am worried that all these antibiotics are destroying my body. I have days where I feel normal. Then days where I feel weak and sickly. Pains in my stomach and lower back.
My question is should I continue to take this antibiotic untul the lab results return? I am scared. I have been healty my entire life. And this has knocked me off my feet. Also wondering if anyone
Else have had these side effects?

Lisa33
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Re: syptoms and side effects

Postby Lisa33 » Sun Jan 31, 2016 2:44 pm

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.
No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Hello Jimmy - Welcome to the site, but so sorry you are suffering with c-diff. Flagyl is usually the first course of treatment, and is a very hard med to tolerate. I also relapsed after Flagyl. Fidaxomicin, also known as Dificid, has a high cure rate and also does not kill the good gut bacteria. Vanco and Dificid both have high cure rates. Vanco does kill a small percentage of good gut bacteria. A 14 day course of Vanco is what cured me. However, many on this site have been cured by Dificid. What you are experiencing sounds like typical symptoms that many posters have had. If you are still experiencing watery D, more than 3 times per day, you may want to talk to your doctor about doing a taper/pulse of the vanco. Relapses are usually treated based on symptoms alone, and not by retesting. Also, if you do retest, the protocol is supposed to be at least 14 days after being off meds, otherwise you can get a false result. It sounds like you have tested too soon, so your results may not be accurate. At this point, I would think that the doctor would want you to finish the course of vanco, regardless of the test results.

And, you are correct the antibiotics also wreak havoc on your body. The real healing takes place after you are off meds completely. It can take some time to feel back to "normal". A lot of us experience post infectious IBS after c-diff. You may continue with loose frequent BM's for some time. It actually took me 8 months to have just 1 BM per day.

Also, if you are not taking probiotics, you may want to in order to restore your good gut bacteria and ward off the c-diff. The two probiotics that many of us take are VSL-3 and Florastor. VSL-3 is a lactic acid bacteria that should be spaced apart from c diff meds, as the meds will kill the probiotic as well. Florastor is a yeast probiotic that will not be killed off by the meds. Many of us also drink the probiotic drink, Kefir that has also proven benefits.

I hope the vanco does the trick for you and you can put c-diff behind you.

Feel better soon,
Lisa

Jimmy34
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Re: syptoms and side effects

Postby Jimmy34 » Mon Feb 01, 2016 7:44 am

Thank you so much Lisa. I will try these probiotics I am currently
Taking align. But not sure how its working. I will try the others and see if they have better results.

Lisa33
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Re: syptoms and side effects

Postby Lisa33 » Mon Feb 01, 2016 9:41 am

Just to note... probiotics can cause issues for some, so just add probiotics in slowly to see how you do. With me, I had excess gas and bloating when i started to take the probiotics, but it was tolerable. Once my body adjusted to them, the gas and bloating subsided.

Jimmy34
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Re: syptoms and side effects

Postby Jimmy34 » Mon Feb 01, 2016 1:41 pm

Thank you. I will make not of that. Were the side effects after completing the antibiotics anything Like the c diff
infection itself? If so how would I decipher the two from
one another? Or would another stool sample be needed 2 weeks
After the completion of antibiotics? Sorry, this is all new and a confusing illness to me.

Lisa33
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Re: syptoms and side effects

Postby Lisa33 » Mon Feb 01, 2016 3:02 pm

It is definitely a confusing illness to say the least. Recovery can be a roller coaster ride for sure, especially early recovery. It can be difficult at times to differentiate between IBS and a relapse. I found the 3 day rule to be a helpful gage. You can find it under CDI Info under the board index. Basically with IBS the frequency is less, and you tend to not have that overall sickly feeling. I would have several BMs in the morning hours, mainly loose to sometimes D, and then be fine throughout the day. Also, with c diff, symptoms get worse with time, whereas IBS tends to get better after a couple of days, thus the 3 day rule. I experienced nausea with IBS, which is something I also had with c diff. I was sure that I was relapsing once in early recovery, and my doctor retested and called in vanco. Luckily, I waited for the results before starting, as I was negative. Most doctors do treat based on symptoms alone though. If there are bad days followed by good days, it's probably normal recovery. As time goes on, the good days will start to become more than the bad days.

The rule of thumb for a c diff relapse is watery D more than 3 times per day for 3 days in a row with the urgency to go.

Hope this helps some.
Lisa

Jimmy34
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Re: syptoms and side effects

Postby Jimmy34 » Mon Feb 01, 2016 3:35 pm

Thank you! Yes that helps. I also found a pharmacy today that carries VSL3 and floraster. The VSL3 suggests to take 2 to capsules a day. Should I start off with 2 a day? Or should I take the full 8? And for how many. Only comes 60 to a bottle. And how long
should I take the floraster?

Jimmy34
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Re: syptoms and side effects

Postby Jimmy34 » Mon Feb 01, 2016 3:37 pm

Sorry suggests 2 to 8 VSL3 capsules a day. Thank you again for your information Lisa. You've been a great help.

Lisa33
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Re: syptoms and side effects

Postby Lisa33 » Mon Feb 01, 2016 5:06 pm

I took 2 VSL-3's daily with active c-diff. I added Florastor in recovery. I started it in recovery as I had learned about it a bit later. I took only 1 VSL-3 and 1 Florastor in recovery, and actually still do (I'm almost 15 months out now). I drank Kefir and ate 1-2 yogurts per day with active c-diff and for several months in recovery. Now I eat one yogurt or drink one cup of Kefir per day in addition to the probiotics. Everybody is different, but that's what I did. The actual recommended dosing on the bottle seems way too much to me. My GI actually told me that 2 pills per day were enough. Others may want to weigh in on their experience. I have no plan to stop the probiotics as I feel like there is no harm in taking them. They have become a way of life for me I guess, and I am also scared to death of stopping them because I have convinced myself that they are still warding off c-diff. :-)

Jimmy34
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Re: syptoms and side effects

Postby Jimmy34 » Mon Feb 01, 2016 5:47 pm

I could not find the kefir . I will look online to see if another pharmacy has it. Is kefir a prescription only? Or over the counter. The other 2 I will start in the morning. I'll try with 2 of the VSL3. I really appreciate all the helpful advice. I was definitely lost before you replied.

hledgess
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Re: syptoms and side effects

Postby hledgess » Mon Feb 01, 2016 6:52 pm

Kefir is in the grocery store in refrigerator section...some it is by organic things..or you could just ask an associate. .good luck

tessa63
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Re: syptoms and side effects

Postby tessa63 » Mon Feb 01, 2016 7:41 pm

Jimmy

I would start slow with those probiotics and try one type at a time. It may be safer take the florastor while on the antibiotics and add VSL #3 once you tolerate the florastor. While on antibiotics the recommended Florastor dose is 2/2x/ per day that is considered double the dose. You can do what Lisa did as well, but I would just start with one type of probiotic at a time. The probiotics can cause bloating, cramps and pain as well and if you start all 3 things at once, you won't know which one is bothering you. I would just start with the Florastor first for a week if you are on antibiotics. If you can handle that then drink the kefir as well. You can always add the VSL 3 once off of antibiotics, but starting all of these probiotics at once could cause some trouble. This is just my opinion because I had some bad side effects , but Im sure others have done well with them.

T

Jimmy34
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Re: syptoms and side effects

Postby Jimmy34 » Tue Feb 02, 2016 8:22 am

Thank you Tessa. Lisa suggested to start with one as well. I will follow your sugestions and see how my body reacts to the floraster first. Also should I continue with the align that ive been taking?

Ril
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Re: syptoms and side effects

Postby Ril » Tue Feb 02, 2016 9:41 am

Just for me, I took the Florastor until 6 wks-2 months after the c diff was resolved ( don't remember exactly) and then switched over to the Align, which is what I take now on a daily basis, 3 + years later. My system tolerates that best.
Rita

iamsick
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Re: syptoms and side effects

Postby iamsick » Tue Feb 02, 2016 3:16 pm

I also take the generic Align from Sam's per my GI. I am now. 10 mths post last cdiff meds and doing well:)
Teresa_68


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