New Years Eve, and here I am.

[saraht]

I don't know what it is, but tonight it hit me hard. I'm depressed, upset, crying on and off. 15 mins until 2014. Back to full blown D, with M. Going several times a day, loosing weight, hardly able to eat. I keep praying its a side effect from the VSL, but sadly I don't think it is.

I'm angry. Angry at the fact that I've have been dealing with this for 3+ years, after getting myself back to normal when I first had c.diff at 23. I'm angry because of the misdiagnosis from the dermatologist that left the infection go for a month, and gave another dr no choice but to put me on high antibiotics. I'm angry at the fact that when I picked up the clindamycin, the pharmacist told me not to worry about c.diff. I'm angry that I can't fully live life with my daughter because I'm on and off miserable. And I'm angry that I was denied a FMT, when I relapsed the last time.

I try to be positive, I am blessed with an amazingly healthy daughter through all this mess, and an amazing husband who has went above and beyond to try to support us because of my health problems. I'm tired of wasting money and seeing doctors who have no clue what to do for me. I relapsed on macrobid, the drug a lot of people take to prevent uti's, and is suppose to be more safe for people like us. I just feel like I'm trying so hard, and only getting dragged down even more. I'm just confused as to someone with my case history can be denied a transplant.

Sorry for being so down in the dumps, I just needed to vent to people who understand exactly what I'm going through.
I pray one day this can all be behind me. No more c.diff, no more yeast infections, no more worry toward this. I want to start contributing more, giving back what you guys have given to me. I feel terrible that I sometimes don't get on for a couple weeks or a month. Thank you all from the bottom of my heart for helping me, listening to me go crazy with worry, and for educating me so I can educate others. Hope you all have a Happy New Year in 2014.

[AllisS]

The holidays can be pretty stressful and a source of rumination even under normal circumstances; having a chronic/possibly recurrent illness certainly doesn't help.

Meanwhile: though I'm on this site a lot I missed your posts about being denied the FMT. What was the reason given? Possible that you'd get a different answer now/from somewhere else, as an increasing number of facilities now offer FMT?

Also, when I Googled VSL just now what I found said that it's an especially potent probiotic. And I found a couple of mentions of abdominal cramps and D as a possible side-effect. This isn't uncommon with probiotics in general. You might want to stop taking VSL for a few days to see if your symptoms improve.

This site is a safe place to vent. No need to apologize for feeling blue!

Hope the year to come will see an improvement in your situation.

[saraht]

Thanks, AlliS. I appreciate the kind words. I've been off the VSL for more than 24hrs. Trying to wait it out and pray that it's not a relapse. I've lost count how many times I've went to the bathroom today, and I haven't eaten more than a half a banana.

The last time I relapsed my ID Dr and myself talked and he thought I would need a FMT, I am his only patient who he's dealt with to have c.diff like I do, so this is all new to him. I had to recommend that maybe we should find a dr to do one. It's so discouraging having your dr sigh a breath and run both his hands through his hair because he's at a loss of to what to do. So I looked up a dr that does the transplants and my ID drs office got in touch with them, and set me up an appt. I drove 2 hours away and he went through my paper work, we talked, and he said because I respond so well while on vanco he didn't think it was necessary. When I'm on vanco, for the most part, things can get back to almost a normal, dispit the IBS flares. BMs can return to an almost normal area for me, buts it's always been like that, then as soon as I go off, usually right around the 2 weeks off period, I relapse. So he suggested I do a much longer taper, which I was. I was down to vanco 250mg every other day, my yeast infections got to a point to where I couldn't treat them with anything OTC, tried 10 days of Diflucan which did nothing. Tried plain probiotic yogurt, with added acidophilus for 2 weeks, just like with Monistat as soon as I finish something, next day it's right back. So I tapered off.

When all this started 3 years ago I took extremely high dosages of clindamycin I believe I was on 4-800 mg 4x a day. It's been so long I can't remember how much. But that did it in for me. I was hit with c.diff, yeast infections, and what they thought was oral thrush. Which to this day, no one knows. I've had drs tell me yeast over growth, I've had drs say it looks like dysbiosis, I've had an ENT tell me it was a yeast but not candida, not contagious. At the time I was pregnant, so they blamed everything on hormones. The continuous relapsing, the yeast problems, the mouth flora problem.

I did go into remission for a short period of time, almost a year, until like I said, I requested macrobid for a uti, knowing it was more safe to take. But sadly I relapsed. If this is a relapse, I hope I can find someone to agree to do one, and that my insurance will cover it. Who knows what my insurance will be like now since it's 2014, and all this Obamacare stuff was suppose to change insurance stuff. He said if I would relapse again, he would consider a transplant. So there's the hope I might be able to get one, I just don't want to drive 2 hrs away with ppl having to take days off work, just to be denied again. Like all of us know to well the feeling of discouragement, and trying to find a dr that understands.

[beth22]

Your symptoms don't sound as if they are from the VSL. I never had that kind of D from it and probiotics don't agree much with me. If this gets worse, I would go to ER. You don't want to get dehydrated. Definitely request a c diff test and I would ask for a culture too in case it is another bacteria, which is also possible. There are viruses going around, but with your history, I would still test for c diff. Have you contacted the Fecal Transplant group to see if they know of a doctor in your area? If you pm me, I could ask the doctor who did my transfer back in 2008 in Oakland if he knows of someone in your area.

[seekingcure]

I think you're on the right track with wanting a FMT if this is, indeed, a relapse. Perhaps the FMT would alleviate your yeast problems also, since that is also caused by a lack of good bacteria. I've wondered if one would help me with my yeast infections, recurrent UTI's and IBS as well. It seems to be when you get to a certain point, it's just really difficult to build up your good bacteria without the FMT. If I relapse again, I will go wherever I have to to get one!

I know you're trying the VSL-3 (which is one I use), but I don't remember if you have ever tried the s. boulardii. A GI in my large group of GI specialists finally recommended that to me after I had been sick for about six or seven months. Little did he know I had been taking it for months. I believe that it helps me with the yeast problems. When I googled it one time I saw it described as "the yeast-eating yeast." Apparently it's a good yeast that crowds out the bad yeast (candida). I did not develop a vaginal yeast infection while on the Vanco and I always get one when I take any antibiotic. I did get thrush from the Flagyl, but I wasn't on the s. boulardii until I had already developed the thrush. I also take a probiotic for women's health issues (yeast infections and UTI's). I alternate between Renew Life Vaginal Support and Primadophilus optima. If you haven't tried any of these, you might check into them. As you can tell, I take a lot of probiotics. I do better when I'm on them, but it takes large doses to help me. Everyone's different, though. Some, like Liz, can only tolerate a tiny bit. But you've got to find out where you stand with the c-diff first before trying these other things.

Agree with Liz, don't let yourself get too sick before you go to the ER and get tested. A new, hyper-virulent strain of norovirus is going around the US, but I think you would have vomiting with that as well as the diarrhea.

I'll be praying for you that you get the help you need soon.

[amyc]

Definitely not a VSL#3 reaction. Are you able to book your own specialist appointments or do you have to be referred by your ID to a specific GI? If you can use your insurance with other doctors, I'd go to Mayo if you live in the northern midwest. If you live closer to Oklahoma City there is a GI group that does FMT, and you only have to have proof of relapse, which you should easily have. There are doctors in the NYC area and in WA state, and in California as well.

I also think you should go to a good hospital's ER to get that test done today. If it is positive it will be part of your strong paper trail demonstrating your continuing history of relapse to make it easier to qualify for the FMT.

[getwellsoon]

I'm so sorry for you. I also agree I don't think its the VSL but could very well be a virus. Can you take Pepto, it might make you feel a lot better. Hang in there we are here for you but if you get much worse you might need to go to the ER. Don't want to get dehydrated. Hope you feel better soon. Carol

[Bobbie]

This is the site to vent so go ahead. You deserve to be angry.

I agree you should investigate FMT's. Look at the Doctors Forum. It lists docs. some our posters have recommended plus a list compiled by another site that lists docs. (including those who do FMTs) in the entire world, including the states by cities. There is also contact info. Many docs. used to require two positive C. diff. cultures to do one - this might have changed.

I had an FMT in OKC by Dr. Mellow in May 2012. It was not "magic" for me (as it has been for others), but I've had C. diff. on and off for a long time and also have diverticulosis. It did help a lot but left me with slight IBS - which most treatments have. It eventually got better. Dr. Mellow is with the practice that AmyC recommended. I recommend him and his hospital Baptist Integris - thorough, clean, kind personnel.

First, get another culture done. Make sure it is a PCR - it has a high accuracy rate (about 92%) unlike the old toxin tests. There is also a LAMP test that is supposed to be accurate. See CDI - C. diff. tests. Best to be off C. diff. meds. for 7 to 10 days before testing if possible. (Some do test positive while on meds. but this is rare.)

Clindamycin was the lst antibiotic implicated in C. diff. It is one nasty drug. I am surprised Macrobid contributed to your problems. I've been on 50 mg. a day for years and have take it a number of times for active infections caused by E coli. When I had a UTI caused by another organism (Proteus Mirabellus) I had to take Ampicillin - no choice; allergic to sulfa, my other choice. Also took Vanco. I felt it would be a disaster but had no choice as kidneys were being affected. It caused my 3rd bout (after 12 C. diff. free years) of C. diff. altho I had IBS for manhy of these years. I was devastated. Thus, I tried the FMT.

Start with the culture and then proceed. Best to you and vent in this forum anytime you want. Best wishes for 2014.

[saraht]

Thank you all so much. I am making sure to drink lots of fluids. I actually ate a little bit of chicken for dinner, and since my husband was off today I took a nap. I feel terrible for my daughter. I almost feel neglectful, because I slept earlier, then the constant running to the bathroom, I haven't got to do much with her since all this picked back up. I did see where a Dr Dutta in Baltimore was recommended but sadly I don't think my insurance covers him. There was another Dr Forman which I think might have worked with Dr Dutta, so he is an option. I was also looking at Dr Kelly in RI. It's a good 8 hours away from me but I have found her very appealing. There is a forum you fill out on the website then fax it in, and they call you if they feel you qualify.

The hardest thing would be convincing my husband to go there. Since he doesn't have c.diff he doesn't understand "wasting the money" to go some where for something as he says "might not work" As supportive as he can be, he can go the complete opposite. It is hard getting time, and money to go some where to have it done.

Anyone have any idea about insurance and coverage with transplants?? Is the colonoscopy covered but the transplant isn't? Is it a procedure that is paid all out of pocket? Or is it something that can be covered under insurance? This part I have no idea about. You would think they would be more than happy to cover a procedure to end spending so much on vanco. When I was pregnant and on vanco , and dificid, I bet you my insurance ate over 30k in charges for the antibiotics.

The liquid vanco wasn't covered at all, but the pills were. Strange huh? Calling my Dr in the am, his office opens early. I will let you all know what happens! Thank you everyone!

[seekingcure]

I haven't had an FMT, but I believe the insurance will cover the cost of the colonoscopy, but not the testing for the donor or the FMT itself. I think some doctors just bill the insurance for the colonoscopy and don't charge any extra for the FMT, but I think you will have to cover the cost of screening your donor. You will probably just have to check with the individual doctors, because they all probably charge differently. Some might not bill insurance at all. I did read that Emory University in Atlanta has a doctor on staff who acts as a donor for those who want to use him. I think there was an article on here under "media reports." You might check with them about their charges if traveling to Atlanta would be an option for you and if you need a donor, although my ID did recommend using a relative over a non-related donor.

There was one lady on here who had a FMT in New York with a donor who was a doctor on staff at the hospital she went to. She highly recommended him and described his donation as "super poop." Do a search and you can probably find her post and maybe get in touch with her and she can give you more info about costs, etc. I didn't want to go to New York, but you are closer than I am and that might be a good option for you.

[saraht]

I am SO upset right now!! 2 1/2 hours to hear back from my ID Drs office for them to say to call the Dr I seen about a transplant! I feel like he is just trying to wash his hands of me!! Mind you this Dr I seen is over 2 hours away. I said "Look, he won't even see me unless I have another positive test" How can I drive over 2 hours to take a stool sample to who knows where! I am so fed up. Lord please give me an answer. I want to contact Dr Kelly in RI but I don't want to do so without a positive test, which apparently I can't get anyone to order. If I have to call my primary and have her order it, then I guess I'll have to do that.

I am just in disbelief. How can a dr not want to treat a patient they have worked with for so long? Now I feel like, if I get the transplant, and have more problems, where do I go from there? Apparently I don't have anymore drs around me that want to even touch my file..

[Bobbie]

You are not alone. Many times, doctors (unlike in the movies) don't want to handle a "difficult case." I went to the same GI for almost 20 yrs. When I had C. diff. (after 10 yrs. of being C. diff. free after my first two episodes) he said he felt I needed another type of treatment (he did the "broth) and didn't want to treat me again. Thank you, Dr. Feel Good. This has happened to others on the site. (He, too, was having health problems at the time and was almost hysterical one time I saw him. "Physician, heal thyself.")

Get the culture done with a local doc. and proceed from there. Dr. Kelly is excellent. She did several FMT's for posters on this site. Carol is right - the scope (way they install good bacteria) should be covered by insurance. I can't remember what the doc. charge for the rest of it. Both donor and done have to undergo quite a few tests - mostly blood - for STD's, hepatitis, and other problems. Is your husband your donor?

My husband was relucant but did go with me to Mayo and the U. of MI Medical Center years ago. He also drove to OKC in 2012 for my FMT and was helpful when I did FE's. Go figure - he never changed a diaper for either of our kids. He tends to "poo poo" (so appropriate I couldn't resist) health issues, but did come through and agreed to be the donor. It was hysterical when he had to do the blood work. (He didn't believe in the FMT - called it voodoo medicine) and also has rolling veins.) I had to go with him to his doctor and explain everything. I showed the doctor an article on FMT's, and he said, "Oh, ick. " I dealt with the lab. assistant who did the blood tests, which was challenging, as he didn't speak English well. When we went to OKC for the FMT, we arrived in a hailstorm - which totaled my husband's car. I should write a story!!

Call your primary, get the culture, and proceed from there. Cross the ID off your list and find a new ID or GI. "Work" on your husband. I practice the "Chinese water torture" method. ("I'm so sick of being sick, I just want to be well, I feel as though I am neglecting everyone, etc." You know best what will work. Don't waste time on anger; use the energy on finding help for yourself.

[saraht]

Oh my gosh, Bobbie thank you for the laughs. I needed that! I was giggling so loud my husband was asking me what was so funny. He too is like your husband, he is willing to go to RI which really shocked the s#%! out of me (pun intended) but he keeps saying stuff like "well what if this doesn't work? Then what?" Like I have that answer or want to even think about that.

The Dr agreed to a PCR, I have the form now, waiting till I need to go which should be any second lol. Sadly they only ordered a c.diff toxin, so if it ends up negative I guess I'll be getting another test for other bacteria. I'm confused why it wasn't done all at once but at this point I'm just over it. He wasn't in the office today, and I don't think she wanted to call and bug him anymore so I'll just take it. I'll let you guys know the results!

[saraht]

Sorry I was typing on my phone. I meant other pathogens like Salmonella, ect. I'll keep you all posted!