New to Posting ... not to Cdiff ...so confused

[LinA]

Hi Everyone,
First, I want to thank you for this form. I have learned soooo much more here than anywhere else! It also has brought me a LOT of comfort just to know that I am not alone in all the crazy things I've been feeling. I was hospitalized on March 11 and filled with many broad spectrum antibiotics. I had D right from the beginning and was tested for C diff many times during my month long stay...always negative. The test didn't come back positive until mid May. GI in FL, where my saga all began, started me on Flagyl. It didn't agree with me so after 3 days switched me to Vancomycin. At that point I felt well enough to return home to NJ. When I got there I saw my GP who was aware of my situation, (and was... and is wonderful!), and made an appointment with a highly recommended specialist in NYC. Sadly, he turned out to be not quite so special...more of a waste of precious time and money than anything else. I have been keeping a log of food, meds, BMs etc. and can find no common denominator to good days and bad, but I did find that I had been on Vanco for 52 days! I have now been Vanco free for 12 days. D never stopped, but now more constant. GP is starting me on a 10 day Dificid course today, but was hesitant because he feels there are other issues...I'm pretty sure he's right. ( I do have an appointment with another GI the middle of Aug). I have lost 40 Lb. and except for the wagging skin part, it was not a bad thing for me...now I am losing my hair :( GP says lack of absorption...stopping D will right things. Does anyone know of anything I can do to improve protein absorption in the mean time? I am on a lactose free diet right now. Also, any feed back on the length of time on Vanco and taking probiotics would be really helpful. I take 2 250mg of Florastor daily.
Thank you in advance, and sorry if I rambled, but wanted to give background before I asked.

[Jackie25]

Sorry to hear you are not feeling well, c didf is sometimes difficult to get rid of and deal with but it doesn't get better :) I took many rounds of flagyl and one 14 day dose of vanco before i was finally given a taper/dose of vanco. It lasted about 6 weeks, in correlation I also took florastor, vsl3, and drank kefir every single day. I know that probiotics are not exactly proven to help, but I feel they did. They definately didn't hurt.

I relapsed during recovery after needing bactrim for a UTI, was given another 6 week taper of vanco and I have been off of it for 8 days now. No D, some M but that is normal while your healing. Dificid has cured many on the site so I hope it finally works for you also :) I have read many places that taper and oulse methods tend to have a higher cure rate than simply the 14 day rounds of vanco or sometimes the 10 day round of Dificid. But everyone is different, what works for one may not work for another. Regardless, I hope you start to see improvement soon and get to feeling better!

[Lisa33]

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.)

So sorry that you are going through this horrific illness. It sounds as if you are doing all of the right things. You have also been on a lot of meds, which can definitely throw your whole GI system off as well. It sounds from what you are saying that the D never subsided, even on Vanco. I can't give medical advice, but as your doctor said, it sounds as if something else may be going on and contributing to your symptoms, as usually there is some improvement with the D when on meds, even if the c-diff isn't completely cured. Were you checked for all other pathogens, such as parasites, etc? Many on this site have also seen Infectious Disease Doctors while battling c-diff as well. I am not sure what you were hospitalized for that attributed to all of the broad spectrum antibiotics, but if there was a prior issue, an ID doctor may be of help in coming up with the right treatment plan for you given your prior medical history. It's just a thought as a second opinion and viewpoint to the GI doctor. If Vanco doesn't work, and you indeed still have c-diff, Dificid may be a good next step as many on this site have been cured by Dificid after Vanco had failed. Some have done Dificid tapers which also cured them. If all meds fail, there is still an FMT as an option. Regardless, you will beat the c-diff. Unfortunately for some it can take more time. But remember, the real healing doesn't begin until you are off the meds altogether. Many of us experience IBS symptoms well into recovery, which can definitely pose themselves as c-diff. However, frequent watery D throughout the day for several days in a row will warrant a doctor visit for a possible relapse. Many of us use the 3 day rule which can be found under CDI info on the Board Index.

I also took probiotics throughout active c-diff and I still take them and I'm 8 months out. I take VSL-3 and Florastor, as well as, drink Kefir and eat yogurts with live cultures.

I hope that you get to the bottom of all of your GI issues and get on the path to recovery soon. You will beat c-diff. Also remember, you can get false results if you test while on meds or soon after. The protocol is 10-14 days after finishing treatment, but most doctors treat based on symptoms alone.

Get well soon,
Lisa

[beth22]

Many people are deficient in vitamins and minerals with c diff because of the D and malabsorption. Has anyone checked your B6, B12, D, iron, etc? Deficiencies in some of these can contribute to D too. I know when I was low in vitamin D, I had looser stools. When it went into the normal range, things got better. I think B12 can do the same. I was also tested for fat malabsorption via a fecal fat test. My pancreatic enzymes were elevated and still are from time to time. I would ask the doctor to test you for all of these kinds of things - a blood test to see if you are anemic - vitamin levels- pancreas and liver, etc. There is also a new blood test called IBSchek to see if you test positive for IBS. I did and I also tested positive for SIBO, which can cause a lot of symptoms too. I know Florastor gives me cramping and D and even a rash. Sometimes probiotics can give GI symptoms too. If you suspect that it might be your probiotics, cut back for a day or two and see if anything improves. I also got a lot of food intolerances other than lactose. I could not eat fruit or vegetables, for example. Just some thoughts, but I would definitely ask for some blood tests after all you have been through. With D every day, they should do a metabolic panel to check your potassium, etc.

[LinA]

Thanks to all of you. You've given me so much info and I will certainly bring up testing for parasites and blood work up to dr. when I see him next week. By the way, I did speak to dr. today and he told me to stop the Florastor also! Thanks again for your input!

[Michelle7198]

Hey Lina I've been cdiff free for 7 months. I started losing my hair 2 months after my diagnosis. It's slowed down but has not stopped. I've had multiple test by doctors they just say telogen effluvium

[LinA]

Thanks Michelle. I'm sorry I haven't posted a reply. I haven't been on the computer in a few days. I was hoping to get some info on hair loss. I looked up telogen effluvium. It made me hopeful that I will not loose all my hair! Congratulations on being Cdiff free. Can't wait until I can post that!!!! I think I'm going to do another post specifically about hair loss....cdiff is bad enough.....but hair loss too!!!!!

[NanciT]

Hi LinA

It sounds like you have been through so much like many here but especially to have the CDIFF test come back negative so often...then positive!

I was on treatment for many months, the last was a taper dose of Dificid for 3 months. I also had alot of hair loss. I am now 10 months out POST CDIFF and my hair is starting to return to normal. I still have IBS and my diet is still limited but slowly things are improving. I was on medication for a long time, I also had a very low VIT D which I am taking now.
Things get better, everyone is different as far as how long it takes but the hair loss did have me very worried, my MD's said it was poor nutrition and I am sure it was a combination of things.
I hope you feel better soon!

[Bobbie]

I always had a problem coming up with a positive test, too. Here is what a c diff expert recommends.


Q. How long to retest after Flagl/vanco/Dificid during active C. diff.?
A. 7 to l4 days and the longer the better. PCR is false positive for up to two weeks as bits of DNA from killed C. diff. are passed out, and if tested too soon gives a false positive result. Culture early is accurate but not easy to get done by labs.

Welcome to the site.