posted
Pretty sure I'm dealing with my first experience with C-Diff. Tested to confirm today, I don't know how long it takes to come back. I am pretty terrified, yet again. Never been on anything like Flagyl for one thing, I have to start with baby doses of everything due to extreme brain herxes, mostly swelling.
Second, can you continue abx treatment after? Feel like I'm doomed. Lastly terrified for my family due to the contagious nature. Being extremely careful until verified but I know my body and this isn't right.
Thank you all again for taking the time to help those of us confused about so much.
Posts: 219 | From pacific nw | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got c diff 2 years ago from antibiotics for a sinus infection. My doctor's office sent me to the ER because they said they can do the test there and I would have the result that day.
Sure enough, they called me later in the day with the positive result.
I was told that it will take 2-3 days if you take a stool sample to a regular lab like LabCorp or Quest.
They started me out on a week of flagyl and I had to get myself to a gastro if that didn't cure it.
It didn't cure it, but it was very tough to take that flagyl. I really got horribly sick. So, if that happens to you, just plow through. (And, I hadn't had lyme for 7 years. So, this is just what happens to many folks when they take flagyl.)
You can continue antibiotic treatments after you are well. But, some doctors will be very cautious and will warn you that it can come back due to taking antibiotics. I was told this by my ENT one year after getting rid of the c diff.
I had diarrhea for 10 or more days before I went to the doctor for it.
Once I got to a good gastro and got treated properly, it was gone and has never returned.
I was advised by the gastro to take one Florastor daily. I continued doing that for at least a month after getting rid of the c diff. That was on the advice from my former lyme doc.
If you don't have a gastro, start finding one now. Get somebody good. Ask the gastro all of your questions such as when you can resume antibiotics.
To keep the family from getting it, use separate towels and wash your contaminated laundry (if any) separately.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you so much!!! So good to hear that if this comes back positive there still may be some hope to treat. I will definitely get in with a good GI doc.
I am absolutely terrified about the Flagyl thing. I herx horribly on new meds especially these powerful ones. Scared the brain swelling will kill me.
Thank you so much again for sharing your time and knowledge!!
Penny (joahsark)
Posts: 219 | From pacific nw | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
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posted
A really good gastro (if you can find one) is one who will give you a fecal transplant if 21 days of vancomycin does not cure your c diff.
21 days of vanco is how I was treated once I got to a good gastro. Shorter treatment given by a lousy gastro did not work in my case.
The fecal transplant gets rid of c diff 95% of the time.
A fecal transplant is done as an outpatient. They give you an "enema" of a healthy person's stool mixed with water. It has all of the healthy bacteria that a person's intestines needs to keep c diff from growing.
These healthy bacteria implant in your intestines and your problem is solved.
So, ask that question of your gastro: Will he order a fecal transplant for you if the antibiotic treatment for c. diff doesn't work?
If you find one who says "Yes" you have your problem solved!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Do you remember if the vanco was 125 mg 4x/day? That's what I'm prescribed but only for 10 days, wonder if I should call when it gets around day 7 (since I need a pre auth that takes a couple days)even if it's better to get the additional 10 days of it.
Thanks!!
Posts: 219 | From pacific nw | Registered: Jun 2009
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TF
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Member # 14183
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Yes, it was 125 mg 4 times per day.
I started out with a lousy gastro who gave me only a 10 day supply. The c diff came right back.
He did this with me a few times. He wouldn't give me refills. I had to call him and go through the 3rd degree to satisfy him that the problem was actually back again. So, I was with him from Sept until December when I finally got in with a good gastro.
The 10 day courses of vanco did NOT do the trick for me.
I got tired of the horrible diarrhea coming back at the end of each of these short courses of treatment. I finally figured out how to spread out the pills I had left until my appt with a great gastro.
This way, I had no more diarrhea and didn't go back to the lousy doc again.
The good gastro said to me right off the bat, "I put all of my c diff patients on 21 days of vanco. I taper off the vanco at the end. And, then if the c diff comes back, we will send you for a fecal transplant."
Well, the 21 day treatment worked!
I guess everyone is different, so don't know if 10 days will work for you or not. But, it was horrible to keep getting the diarrhea back about a week or so after my treatment ended.
When it would come back, that included being waked up in the middle of the night with about 10 seconds to get to the bathroom.
I could have 12 to 14 episode in a day.
So, it was a real ordeal until I got in good hands. Then, it was a breeze.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm going to call her a few days before the 10 runs out and requests another 10. Just to make sure. I need to return to treatment. Thanks TF!!!
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
Everyones experience with c diff is very different. I for one have not been able to tolerate long term antibiotics again after my severe bought with c diff. Ive been on a few days azithromycin for bronchitis and did fine, and a course of cipro...but my gut has never been the same since c diff.
A fecal transplant is not an overnight cure. Once done it takes a good 6 months to allow the newly implanted bacteria to establish itself in the large intestine. If you resume antibiotics shortly after receiving a transplant, its a waste of time. The majority of c diff cases do not require a transplant.
How I have managed lyme treatment since c diff. I tolerate very well oxidative treatments that not only kill lyme, but also kill or suppress c diff such as ozone treatments, photon therapy, MMS/Chlorine Dioxide. I did great on oil of oregano. and someone I know with c diff has done well on IV vitamin C
Depending on how long you have had c diff and the severity of it, you may be able to recover quickly and continue antibiotics. There is a vanco puse dosing method that many have had good results with.
I was just thinking this morning I didn't get it until I stopped my IV and went on oral Biaxin, is that because IV doesn't go through the GI tract? Do people who stay on IV do better dealing with Cdiff?
Thanks again.
Posts: 219 | From pacific nw | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
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posted
Here's a good quote for you from Burrascano:
"Vancomycin- observed to be one of the best drugs in treating Lyme, but potential toxicity limits its use. It is a perfect candidate for pulse therapy to minimize these concerns. Use standard doses and confirm levels." (p. 19)
So, while you are treating c diff, you are also treating lyme!
And,
"The induction of Clostridium difficile toxin production is seen most commonly with ceftriaxone, but can occur with any of the antibiotic regimens mentioned in this document. However, pulsed dose therapy and regular use of the lactobacillus preparations seems to be helpful in controlling yeast and antibiotic related colitis, as the number of cases of C. difficile in Lyme patients is low when these guidelines are followed. Be sure to test stool for both toxin A and toxin B when evaluating for C. difficile colitis." (p. 22)
You can also ask your doctor about IM Bicillin (shots in the butt) as a way of treating lyme and not being so hard on the digestive tract.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Oral vanco stays in the gut and does not get absorbed systemically due to its larger particle size unless leaky gut is a problem too
IV vanco doesnt cross the intestinal lining in large enough amounts to adequately treat c diff, thats why it is ALWAYS given orally to treat c diff. However, Flagyl can be given orally or IV because it reaches the gut in large amounts regardless of how it is taken.
"The oral administration of these medications is the preferred route, because C difficile remains within the colonic lumen without invading the colonic mucosa. Vancomycin is poorly absorbed in the intestinal tract, thereby promoting high concentrations within the intestines while significantly reducing the prevalence of adverse systemic effects."
"Intravenous vancomycin is ineffective and should not be used for C difficile. "
Everyone is so different on what they can tolerate after c diff. Some never have a problem ever again. In a way, Im thankful I got c diff because it forced me to seek alternative lyme treatments which I was against before. It showed me the path to better health.
Posts: 747 | From Utah | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, the quote I gave you about vanco from page 19 of Burrascano is actually talking about IV vanco. So, it doesn't apply to your situation joahsark.
Thanks to kimmie for pointing this out.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks guys. I did review Dr. B's guidelines, as always when making this decision with my LLND and then requesting the oral vanco form my PC. Sounds like the oral vanco since it stays in the GI tract is going to to do a great job (hopefully) on the cdiff but not lyme etc.
Third day on the oral vanco and seeing some progress, I am going to ask her to extend it to 20 days instead of the 10 per your info TF.
I honestly can't fathom where my LLND will go as far as my Bart treatment when this is over, it has recently become extremely severe. Scariest part of all of this.
So appreciate both of you!!
Best,
Penny
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
No problem TF...I fought c diff for a LONG time and had to learn a lot
joahsark, please keep us updated on your progress and treatments etc....we all learn from each other's experiences Best wishes!
Posts: 747 | From Utah | Registered: Apr 2010
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Wondering if you'd mind sharing some of the alternatives you were fortunate enough to find that helped the most.
At this moment I simply cannot fathom a treatment for my most sever symptom of encephalopathy, horrible brian pressure and pain, that doesn't include hard hitting abx. I guess I'll find out at my next appt.
I do know I'd like to try MHBOT after reading Phoiphs journey with symptoms very much like mine.
Thanks so much!!
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
I think photons/bionic therapy was my biggest improvement from alternative treatments and I did it while fighting c diff so it will not cause a c diff relapse.
I also got improvement from IV ozone and insufflations
By far the best supplement for me has been "cellfood" ordered from iherb.com. It oxygenates the blood and either kills or suppresses infections. Hard to say, but I was symptom free on it
I read the book by Ed McCabe called flood your body with oxygen. Fantastic and although it doesn't mention cellfood directly, it is a stabalized liquid oxygen supplement. Anaerobic bacteria can not survive in an oxygen rich environment
MMS/chlorine dioxide helped my gut issues tremendously but did cause diarrhea at first. It kills lyme and confections as well
Another great book I read is "cancer, step outside the box" there I learned about essiac tea for detox and immune support, vitalzym systemic enzymes for inflammation and hopefully target biofilms. Vitalzym is great for pain
The website cancer tutor I learned about organic sulphur or MSM. I make sulphur water from sulphur crystals (yuck) and drink it twice a day. It has to be pure sulphur crystals. Methylsulfonylmethane (MSM) is an organosulfur compound with the formula (CH3)2SO2. It contains oxygen (o2) and it penetrates cells, oxygenates them and detoxes them. It did cause diarrhea initially for me, but improved my gut with continued use. I'm not sure if it can kill microbes or not but I suspect it at least suppresses anaerobic bacteria.
Portable FIR sauna wonderful for detox and pain.
Goodness I hope I'm not forgetting something. If you decide to try cellfood....go slow and be aware it may cause some loose stools but actually improved my gut with time.
Hope that helps.
Posts: 747 | From Utah | Registered: Apr 2010
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So much info, it'll take me awhile to get through it.
Just invested in a really great portable sauna.
Really interested in the oxygen connection as I've been heavily researching MHBOT for brain injury due to illness. My brain swelling and all that goes with it are my most horrible symptoms.
Going well with the vanco. Ordered a specially made probiotic from Custom Probitics and in between taking Sac. B. I have a phone appt with my LLND this morning. Anxious to see what her plan is to continue treatment.
Thank you again!!
Posts: 219 | From pacific nw | Registered: Jun 2009
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
joahsark,
How loose was your stool with c-diff? Does it have to be watery diarrhea to be considered a diagnosis? Unfortunately, my bowels are going downhill again since I upped my biaxin dose.
thanks
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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As mine got worse over a few days the stool became looser and looser but no, you can be diagnosed and have a positive test without loose stools, my son was, with a positive test.
Posts: 219 | From pacific nw | Registered: Jun 2009
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