C Diff Nightmare

Im a 21 year old woman with two kids.I contracted C DIFF back in February of this year. I recently was just diagnosed with it yet again this past week. I was put on 500mg of Flagyl, three times a day. After four days everything seemed to be just peachy (considering how awful c diff is), when I noticed a throbbing at the base of my skull. It became so intense I assumed I was having a reaction to the medication and switched to Vancomycin, another alternative for c diff. For those of you unaware, it is a VERY expensive medication. I paid $433.53. After two days on the Vanco, I noticed my head aches were getting worse and worse. Then the pressure started. It was so intense, it still is. I can feel it from behind my eyes and the roof of my mouth. The pressure is so intense I feel like I'm dying. Had an MRI done to rule out an aneurysm or something, it was clean. Got a lumbar puncture done, still nothing showed up. It's been five days, the pain/pressure has not let up. At times it feels like my brain is being twisted around like a wet washcloth. It has taken a toll on my life and totally consumed my whole life. I thought it was an allergic reaction to the flagyl, but I'm not so sure. If anyone has had these symptoms as well I'd appreciate your input. Thanks so much.

This is extremely unorthodox approach, so think over it before you go this route. Personal experience first.

I have migraine as well as UC. UC is very well controlled but migraine is not. Migraine is of a kind that none of the traditional medications work, not even Percocet. The only thing that works is NSAID, like Advil or Alleve. But this is catch22. If I take advil, my migraine will stop but I will flare in 4 hours, then the Prec course, weight gain etc. etc. You know the drill. None of the neurologists could help me so far. One neurologist gave me highest possible dose of Verapamil and told me, as long as this holds, you are good, if this stops working, he can not help me. Still the migraine frequency was once a week at least. That equals to 12 to 18 hours of my life in dark room.

My son has Autism. There is an approach that few parents are trying. Its Chlorine Dioxide (CD). It has been used in our drinking water supply for a while, without most of us knowing. The opponents call it bleach, but it is not. I studied extensively before trying is out. EPA and FDA websites do a great job scaring people from it. Even I was hesitant for 2 years and when I exhausted all the options and the pediatrician recommended DS to be put on medications, I looked at CD as a final shot.
But how could I give this DS, when there is so much fear mongering going on? Although I studied, there was a small doubt in my mind, what if anything goes wrong.

So there I was. I started CD. As I started my migraine were pretty bad. But they were different than my usual migraine. So I thought the CD may be causing it. CD use in Autism community is connected to worms, as the community/pioneer calls it. There is no pathological evidence for it but something does come out, may be skin layer or may be the worm indeed. That is up for argument. I don't care what it is as long as I see the benefit. I increased the dose very slowly over the period of 3 months and honestly, it relieved me of my migraine. 3 months and I have had only 2 migraine episodes, which is VERY unusual.
Then, I had to discontinue it. Because the protocol does not allow any minerals and antioxidant to be taken with it. The biofilms where majority of gut flora lives is connected using minerals and antioxidants kill CD so you do not get the action of it. Verapamil constipates me and I was using Mg-Citrate to regularize BMs. Without it, I was stressing at BMs and it led to bit of bleeding. It freaked me out and stopped. As soon as BMs regularized, I was fine.

If you read until now, you must be wondering how it connects to CD (and your expensive Vanco).

I treat CD as mass killer of gut bugs, be it good, be it bad. I did not come across anyone noting that their C.diff was resolved by CD, because the state that you are in when you have C.Diff is crazy as it is. I doubt anyone would even think of this. You have an option to try, start low and slow otherwise CD is really nauseating and at higher doses you get a burning sensation in the throat. I asked on this forum if anyone tried CD and they told me that it burned like hell. Not in my case. I started with very low concentration.

Side effects or ill effects, I took it for 3 months 2X the dose of DS and I am good. DS has been taking it for almost 5 months and he is good (and actually showing improvements). I don't get into CD community much as it works pretty much like cult and not open for criticism, but I use CD as a means of correcting gut imbalance. You take CD for a while and clean the gut flora (the protocol suggests you take specific probiotic along with it but I didn't take it) and then repopulate with good bug. During that period, you make the lifestyle changes necessary.

Let me know if you are interested. I don't mind typing a bit more, if it helps you. Otherwise there is a facebook group you may want to join (but then you have to accept their cult mentality).

I might also add that I get intense pressure behind my eyes, nose and the roof of my mouth. It's so intense that it's been affecting my hearing. I've been told that flagyl and vanco can cause ototoxicity, hearing loss. I pray this is not what is happening to me,

You should NOT be taking either med with that severe of a reaction/side effect.

I'd have to agree that you really need to get off the antibiotics and do a FT. What you're going through is crazy and could wind up being permanent if you don't stop. It could be too late already. My personal opinion in your case is that you could eat 100 tubs of yogurt per day and not get enough probiotics. You really need to take some good mega dose probioitics such as VSL. Yogurt is a very small drop in a very large bucket.

Sorry to hear your trouble with cdiff. I have had cdiff three different times, and each time went on flagyl then onto vancomycin for 2-4 weeks. My last attack was actually this month where I was put on both flagyl and vanco at the same time. The meds made me very sick with headaches, nausea, diarrhea and then some. After about a week of the antibiotics I started to notice some hearing loss in my right ear which is something to look out for. Luckily after the two weeks, a stool culture confirmed negative for cdiff. However I still struggle with some side effects. 10+ Bms daily which is also from my left sided UC. Personally if I get it again, I will definitely try for a fecal transplant and I think you should too. Try to keep up with probiotics and that yogurt. best of luck

I stopped taking the Vanco permanently today at 1pm. My symptoms are mostly gone, my hearing is still off and my head aches Abominably but I hope I'll recover. I've been on it since the 11th but since I can't take flagyl or vanco I'm desperate to get rid of the c diff so I'm trying Primadophilus Reuteri, I ordered it today. I've read some stories that say it cured severe colitis from CDiff. I'm hoping and praying it'll do the job!

My doctor is a quack and said Vancomycin doesn't cause those side effects, I'm from the U.S, I live in Florida. The symptoms came back again, not as intense as before but they're still bad. I'm hoping they'll subside in a few days or weeks but with the way I felt on them I'm almost 100% positive that it made a permanent effect on me. They told me to keep taking the Vanco, but I know what my body is capable of and I just couldn't anymore. So I did a lot of research and found that some people who took Reuteri were cured of their c diff. It's a long shot but I don't have many options left.

bfogg, my doc said the same thing about my vanco side effects. he said it isn't absorbed in the body, only the GI tract. but it's like, how do people get all the reported side effects on the package if it isn't absorbed. makes no sense.

i've never heard of reuturi helping with C diff. i think i took it along with sacchara. boul. and vsl. i can't remember the others. i was living off of probiotics but it still kept coming back. such a PITA!

Oh gosh. What a tale. Is the doctor who is "treating" your c diff a GI? If so, maybe you can go to your general doctor / internist to get another opinion about what's going on.

For probiotics --
Culturelle has the Lactobacillus GG that has also been found to be helpful for c diff
You might also want to add S.Boulardii to the mix. There have been a number of studies that show it helps reduce the recurrence rate. (I'm pretty sure the S Boulardii helped me get rid of the c diff.)

If you fail treatment on both Flagyll and Vanco, you can likely get your insurance to approve trying Difficid, which is a newer antibiotic for c. diff that has good results and lower recurrence rates.

As others have said, a fecal transplant is a very good option. You'd obviously need to find a doctor who has done them before and can get the appropriate approvals. The FDA will only allow it for those who have failed other treatment for c diff.

Did you say you are in Florida? There's a Mayo Clinic in Jacksonville. You'd get great doctors there if it's feasible to go there.

Hang in.

I've been treated in the hospital over the last five months for reoccurring C Diff. Maybe since I can't take the proper medication to treat it, they will approve me for a FT.