Newbie here, just need to let it out!!

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georgina
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Newbie here, just need to let it out!!

Postby georgina » Sat Sep 12, 2015 11:04 am

Hi guys , i am a 30 year old female , nurse, from Romania and i have been fighting this nasty bug for 5 months .My job has it's risk's so back in april i was suspected for TB and started anti-TB meds for a suspicion that was never proven bacteriologically or clinically which is how this whole nightmare started.I was put on Metronidazole at first but i was having constant nausea and i was vomitting and after 7 days i put was on Vanco taper for 3 weeks(stopped the TB meds for the time i was on Vanco) . After i finished Vanco i felt pretty good for a month even though i was taking the anti-TB meds which are all antibiotics, could eat well and having just 2 BM per day but one morning out of nowere it started all over again . I was put back on Vanco taper and Saccharomyces B+MOS but this time i wasn't allowed to interrupt the TB meds and when i went down to 125mg/day i relapsed again.I went up again to 125mgx4/day but i didn't responded to treatment anymore.My pneumologist doesn't care about my guts and the only thing she cares about is to finish my TB treatment (which is going to last for another month) and my ID says that i should take more Vanco but it seems like it doesn't do nothing for me anymore.(Doctors in Romania are so disinterested) I experience frequent and loose BM again up to 6 times/day but no other symptom (no pain or lack of energy , maybe a few shakes here and there) but the frustration and the depression are overwhelmig. For the past 5 days i've been trying the FE home with my husband as donor but is day 5 and i don't feel any relief.When or how will i know if it's working?? I feel so hopeless and i don't know what to do any more.
I'm so angry on my pneumologist who have insisted i should take anti-TB meds 6 months for just a suspicion (no symptoms of TB and no bacteriologic proof)!!

PS : I'm sorry for my bad english but it's just not my language.

beth22
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Re: Newbie here, just need to let it out!!

Postby beth22 » Sat Sep 12, 2015 11:24 am

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.)

At this point in time, maybe your D and symptoms are from the TB meds and not c difficile. If you are still on the vanco and you have done the FE, it is unlikely that this is c diff, but I guess possible. I had to take Levaquin last year along with vanco and I had D every single day that I was on the medications. When I stopped the Levaquin, I was told to continue the vanco and that gave me D too. When I had c diff, it also gave me looser stools. I know sometimes a person can test positive for c diff when they don't take a high enough dose of vanco. We have had a few posters, but not many, who had that happen. I would see about being re-tested and if it is c diff, then maybe you need to increase the dose of vanco until you finish the TB medication. After you are done, FE should be helpful. But, they don't work right away either. Has your husband been tested for c difficile and other pathogens?

georgina
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Joined: Sat Sep 12, 2015 10:07 am

Re: Newbie here, just need to let it out!!

Postby georgina » Sun Sep 13, 2015 1:54 am

I finished Vanco the day before the infusion , and i have tested my husband's stool for parasites and GDH/Toxins and it is negative.I'm only taking anti-TB meds 3 days/ week and i did 6 infusions and untill today i was able to retain them more then 5 hours.However today was my 6 -th day and i guess it was to much mixture (400ml) because i wasn't able to retain it more the 15 min.It is verry hard for me to test positive , last time when i relapsed i had to take 4 tests and the only " low grade" positive test was the 4-th (we don't have many clinics in Romania that are doing PCR for CDiff).

beth22
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Re: Newbie here, just need to let it out!!

Postby beth22 » Sun Sep 13, 2015 2:26 pm

Have you been checked for any other conditions like celiac or Crohns? Even though your husband's stool has been tested and is clear, you should be tested for any other pathogens. We have had several posters that had other pathogens - either parasites or another bacteria. It would not hurt to rule it out. I don't know if they test for SIBO in Romania. Many of us that have had c diff are left with that. It is a breath test.

georgina
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Joined: Sat Sep 12, 2015 10:07 am

Re: Newbie here, just need to let it out!!

Postby georgina » Mon Sep 14, 2015 1:27 am

Thank you for your answer Beth22.I haven't been tested for Crohns and i don't think i'm gluten intolerant since i've always eaten white bread and never had issues ( even when i was on Vanco ) but i will try to ease back from gluten just to see how it goes.I've been tested for other pathogens and i'm clear but for SIBO....i don't know, i'll have to check.
However today is the 7-th day and i actually feel better , i only went once ( but still no form).

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Newbie here, just need to let it out!!

Postby beth22 » Mon Sep 14, 2015 1:47 am

You could try adding some probiotics or drink kefir. Sacromyces Boulardii is a probiotic that won't be killed by vanco because it is a yeast and it is supposed to help for traveler's diarrhea as well, so it may help to firm up stools. If you do introduce some probiotics, do it slowly because they can also cause GI upset in some people. Kefir has been shown to be beneficial in preventing c diff relapses. In Media Reports there is an article about a study that was done with that. I am sure they must have kefir in Romania. You could try that. I'm glad that you are showing some improvement. My stools were loose on vanco and I had to go more often as well.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: Newbie here, just need to let it out!!

Postby georgina » Thu Sep 17, 2015 4:05 am

I'm taking Saccharomyces boulardii+MOS from Jarrow.Kefir and yogurt is giving me bloating and gas but i will try it again just to see how it goes.


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