Possible breakthrough drug being researched -

[VaxilRae]

http://www.nbc12.com/story/22490081/12- ... eakthrough

[getwellsoon]

This is such wonderful news. I can't wait for this drug to be out. Just imagine an end to the nightmare of CDiff, not having to worry about taking ATx. Its the answer to all our prayers if it comes to fruition. Carol

[Peanutmop]

Hi,

New here just wanted to say that I sent an email to Doctor Hoffman. He responded that they will be beginning trails soon for this new treatment.

[Getwellnow]

I am new to c diff and struggling. My question is: if this drug were to come out in a trial, would you try it, or would you go the traditional route? Which choice do you think is riskier? My doctor goes the traditional...flagyl, vanco, vanco taper, and will only consider FMT after 3 failed attempts and a hospitalization. If it becomes available, I'd like your input. I have bad experiences with new drugs. I hate to get so bad off before getting a FMT.

C diff has wiped me out. I started with a staph infection, was given doxycycline, several rounds, and ended up with c diff. I was losing weight - from 137 lbs to 119lbs in 6 weeks, no appetite, terrible abdominal pain, no D. (Maybe I was backed up?). After 2 different ER's and 6 doctors, one finally ran the c diff test. (Even when i asked to check for c diff they ruled it out because of no D) I took Flagyl for 14 days, D did come and go. Felt better, no pain. 2 days off of it and it came back full force. I am worried about antibiotic resistance.

What makes c diff so dangerous? The dehydration? I have received 3 liters of IV fluid in the last 11/2 weeks and am still losing weight and insatiably thirsty. I also have Oral Thrush. I can't eat enough food to gain weight.

I am wondering if there is also something else going on in addition to c diff.

[seekingcure]

Hi Getwellnow,
It certainly sounds like c-diff is putting you through the wringer, but know that you WILL eventually get well. It just takes longer for some of us than it does for others.

I believe that I would try this drug if it passed the clinical trials. I like the idea that it does not cause antibiotic resistance.

I agree with you. I don't understand why we have to get desperately ill to be able to get the FMT. Personally, I would like to see Flagyl done away with altogether. It seems to be working for less and less people. I think they should start with a Vanco taper, pulse and if that fails, go straight to an FMT. Why on earth one would have to become sick enough to be hospitalized to qualify for an FMT makes no sense to me.

When I started with c-diff, I had a similar experience to yours. I had used Clindamycin vaginal cream and two days before I was finished with it, developed severe abdominal pain and was unable to pass gas or stool for 24 hours. I did not use the last two doses of the cream. In retrospect, I was hurting badly enough that I should have gone to the ER, but I was in so much pain that I didn't even feel like getting out of the bed. I just laid curled up with a heating pad on my abdomen. By the next morning, I was able to pass a small amount of M-covered stool, and this pattern continued for about a week. In the mornings, before a BM, I would be doubled over with pain in my lower left abdomen. I was finally diagnosed about two or three weeks later, when I drank milk on two consecutive nights and had diarrhea shortly after both nights. My GI agreed that I was probably very close to having an ileus when my c-diff first started. If I had used those last two doses of Clindamycin cream, I don't know what might have happened.

Are you taking Vancomycin now and for how long? I had a friend who took two rounds of Flagyl and it kept coming back, but after the first round of Vanco, she was cured. Hopefully, that will be the case for you as well.

How long have you been off the Flagyl? I could hardly eat anything at all while on it and for several weeks afterwards. Once I was on the Vanco for a week or so, I began to feel better and started to get my appetite back.

If you are not taking probiotics, you might ask your doctor about those. A lot of us have found them to be helpful. However, start slowly with them, because some people cannot tolerate them and will get D from them. I, personally, take VSL-3, s-boulardii and a special one for vaginal and bladder health (because I am very prone to UTI's). Do your research and decide which probiotics might be best for you. One that many of us have used that seems to help with appetite is Primadophilus L-reuteri. Yogurt and knifer are good also, if you can tolerate them, but a lot of people with c-diff develop problems digesting dairy.

If you feel like there is something else going on in your intestines, you could ask your doctor to run a stool test for ova, blood, and parasites, as well as some of the more common pathogens. My doctor ran that test after my first relapse to make sure nothing else was going on besides the c-diff.

Oral thrush is very common with Flagyl. I had it too. Ask your doctor for some Nystatin Swish and Swallow. I didn't swallow it, but just held it in my mouth as long as I could and then spit it out. I think you could do it either way. The s. boulardii is a beneficial yeast that may help with the candida, both orally and vaginally. I believe taking it kept me from getting a vaginal yeast infection while on the Vanco for several months. Be sure to ask your doctor about this one, though, because it's not recommended for anyone who is immunocompromised or has a feeding tube. Google it and read the research. It can apparently rarely cause a serious fungal infection, usually in immunocompromised individuals, so you have to weigh the risks. I was treated for eight months by the same group of GI doctors before the last one I saw finally recommended the s. boulardii. I had already been taking it for many months at that point. The other doctors in the group said they had never heard of it.

One of the moderators will be along soon to give you the official "welcome." I hope you can soon start to get better and start gaining some of that weight back. Let us know how you do.

[Getwellnow]

Thank you seeking cure, your reply was comforting. I am fearful this won't get better.

Yes my doctor thought I had gasteoparsis and did a c diff test just to check. The pain was intense. I could not get comfortable in any position. I took Pepto Bismal thinking I had an ulcer which may have added to the problem. She put me on an anti spasm med and a pain med which slowed things down too.

I find the whole probiotic topic confusing. Whether to take when taking Flaygl, how many hours after taking it? The GI doctor said it was a drop of good bacteria in the ocean of bad bacteria and that she recommends it when the Flagyl is done. The on call doctor called in more Flagyl until I can see the GI tomorrow

Thank you for your help. I am glad I posted.

[Bobbie]

Getwellnow,

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.” Also read The C. diff. Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

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. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site and usually issue a warning first.

Again, welcome. Remember, the odds are in your favor. (END)

Many docs. will consider an FMT after two failures on Flagyl, Vanco, or Dificid. I would consult a specialist if you aren't already doing so - a GI or an ID. Check out the Doctors Forum. There is a list of docs. who do FMT's in every part of the world. Also check the FMT Foundation's list of docs. (It is listed on the site and also in LINKS on the home page.) Their list is most current than ours.

Flagyl isn't effective for many cases of C. diff. now. Many develop awful side effects from it. It is a lot cheaper than the other two drugs, but you can often get assistance with payment for the other two.

Space probiotics as far from Flagyl, Vanco, and Dificid as you can because they can kill some of the good bacteria in the probiotics.It's doesn't make a difference with Florastor because it is a yeast.

Best of luck. Keep us posted.

[seekingcure]

When you see the doctor tomorrow, I would ask for the liquid Vanco, unless you have very good insurance that will cover the capsules. The liquid can be mixed for you at a compounding pharmacy and it is much, much less expensive than the capsules. The only drawback on the liquid is that it has to be refrigerated and that it only lasts for two weeks after it is mixed up. This is not an issue if you are only taking a two-week course, but can get tedious if you are on a long taper. It was still worth it for me because a two week course of the capsules would have cost me almost $2000. A two week course of the liquid was about $150.00.

GI's all seem to have different opinions on probiotics. Some swear by them; others swear they don't help. My GI recommended that I take the VLS-3 during the treatment and for at least a month after finishing treatment. I can tell that it helps a lot with my IBS, so I will continue it for as long as I can afford it. It's rather expensive but worth it to me because I seem to have so much less pain when I'm taking it.

You're not going to have any appetite until you get off that nasty drug, Flagyl. Tell the doctor you don't want to take anymore of it and you want the Vanco. I felt so much better once I got off the Flagyl and on Vanco. I had a lot of side effects from the Flagyl, including loss of appetite, chest pains, tachycardia, numbness in my fingers and toes and severe panic attacks. I honestly think it added to my feelings of "gloom and doom."

And I agree that you shouldn't have to go through three failed treatments as well as a hospitalization before you can get the FMT. If you should relapse after this course of Vanco, I would recommend you begin searching for a doctor who will do the FMT. Check out those lists that Bobbie suggested.

Good luck tomorrow and let us know what your doctor says.

[seekingcure]

Just one more thought: I am assuming you've had severe diarrhea that lasted 1 1/2 weeks that caused dehydration, which necessitated the IV fluids. Is that right? You also mentioned that you are constantly thirsty. Undiagnosed, uncontrolled diabetes can cause both weight loss and thirst, as well as excessive urination, which can cause dehydration. It can also make you prone to fungal infections, like thrush. Is it possible you could also have undiagnosed diabetes? Have you been checked for that? Surely with all the ER visits, you have. It just dawned on me that some of your symptoms do go along with uncontrolled diabetes and I wanted to mention this in case that's a possibility.
I hope you get some answers at your appointment today.

[Getwellnow]

Thank you all. I have also been wondering if it could be diabetes. The thirst and dehydration has been excessive even when I wasn't having D. My D was never severe. I haven't seen other people post that the dehydration, peeing all the time, and totally clear urine have been symptoms. No doctor has ordered a check for diabetes. One ER said it did not show up in blood work, but, I had not eaten for 14 hours at that point. I will ask today.
I will also ask about Vanco as the Flagyl seems to hold it in check but not clear it.
Is it possible to have been fighting c diff for a very long time? I have had what a doctor told me was reflux for over a year and Prilosec didn't ever help. The pains are the same as what I felt with c diff only intensified. While on Flagyl, all those "reflux" pains disappeared.

[seekingcure]

If you hadn't eaten anything for that long, I doubt the high blood sugar would have shown up, if that's what it is. Are you eating any better now? If so, maybe it would show up now.

Roy, love the snowball fight!