randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am positive i have c. difficile again. i am passing green stools then watery diahhrea rest of the day at least 3-4 times. lower abdomin is very sore and i'm nauseous.
i am on flagyl so i'm confused as to how this could be happening.
every single time i take antibiotics i get c. difficile. this is the third time. my gastro said every time will get more severe so you need to stop all antibiotics and only take them in life threatening situations. course he doesn't believe i have lyme.
i'm so discouraged. how can i take all these drugs if my body just says no way....i can't go anywhere because of the diahhrea, i'm not getting any sleep. i'm flat worn out.
trying to eat bananas and drink lots of water, take probiotics.
i just may have to go herbal or something like schardt or buhner.
i think antibiotics are just toxic for me.
got any ideas? yep, will call llmd tomorrow. another two hour trip if he wants to see me....rats....
i'm going to ask for diflucan anyway because i'm sure i have a massive yeast infection now too.
gee, isn't lyme fun??
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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So sorry to hear this! I know what you're going through. I can't take any antibiotics anymore(even IV rocephin brings it on for me). Incidentally, I've always been on flagyl. I've had refractory c. diff twice and have had to take vancomycin.
Forgive me if you already know all this--but unfortunately it takes three negative (diarrhea)stool tests in a row to rule it out. I will be hoping that you are negative!!
Also, some people have success taking saccharomyces boulardii in addition to their probiotics (such as Theralac). It's a beneficial yeast (won't give you a yeast infection or aggravate one you may already have).
You may want to also try lactobacillus GG (in a product called Culturelle). Freshly ground flax seeds are supposed to help create a friendly environment for the good bacteria.
Arabinogalactan is also supposed to support a healthy intestinal environment (I use Nature's Plus RX immune formula for that).
Hopefully for you, your tests will be negative. If your LLMD is absolutely sure you don't have c. diff, sometimes they prescribe lomotil (a special anti-diarrheal medicine) to take while you take antibiotics. You must be sure you don't have c. diff, however, or lomotil will make it much more serious!
In the meantime, perhaps some of these supplements will offer relief! I'm sorry you're going through this...I truly feel your pain. Posts: 136 | From North Carolina | Registered: Apr 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Oh Man Randibear,
What the heck else could go wrong? Something is going to go your way really soon....I feel it. Keep your chin up.......maybe an herbal protocol is the answer.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Ugh.. You poor thing! I think you'll have to consider herbals and Rife. I worry about the fact that you went into a tailspin last time you took some herbs....so be careful!
I hope you get over this bout SOON!! It's dangerous stuff!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sorry to hear about this. I hope you can find a better way to heal your health.
All the best!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Perhaps you don't have enough stomach acid. Are you taking NSAID's?
This is interesting. http://www.gihealth.com/html/education/cdifficileRecurrent.html Cholestryamine resin (Locholest, Questran, Colestid) is sometimes combined with antibiotic therapy. This medication is marketed to lower cholesterol, but may also be of some help by binding and eliminating the C. difficile toxin from the intestine.
Cholestryamine is a powder that is mixed with water and usually taken by mouth once or twice a day. It can cause some bloating and can not be taken within two hours of any other prescription drug including antibiotics.
Posts: 6286 | From Oregon | Registered: Jan 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Take VSL#3. Read Kelly Karpa's book--that's how her son got over recurrent c dificile.
Posts: 2276 | From united states | Registered: Jun 2004
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One of Lymenet's own patient-activist covered this topic pretty thoroughly in a Public Health Newsletter. You might be interested in reading about her experience herePosts: 487 | From USA | Registered: Feb 2002
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posted
up for randi
Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well at least the diahhrea has stopped. i went on just flagyl only for a couple of days, but right now am suffering extreme weakness from loosing all that liquid.
i'm just so down right now...i'm going to start looking at alternative treatments, maybe that diflucan and pennicillin thing, uh, schardt, maybe....or rife or something...just anything other than antibiotics right now.
i'm pretty nauseous and don't want to eat. i'm also doing the yeast thing...
there just has to be a better way...
it's late, and i'm pooped out (literally), so i'm off to bed to try and get more than 2 hours sleep....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Sounds weird, because flagyl is used to treat c. dif! Are you getting stool tested? Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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posted
Randi, I have recurrent c diff. Have you tried liquid vancomycin? A compounding pharmacy can make it for you at a fraction of the cost of vancomycin pills. I have taken it for 8 weeks, at acost of about 160. Before that my co-pay for ten days of vanco oills was about 600. There are several patients who have cleared recurrent c diff using vanco for several months. Others have pulsed or titrated vanco and there is one protocol where pulsed vanco is followed by Xifaxan as a chaser. A c diff exoert will tell you those are the drug options after flagyl has failed. I didn't try the xifaxan chaser because I couldn't get the titration down... In my case the vanco did help control the diarrea. C diff forms spores hide during treatment then reemerge....
I saw two c diff experts in Baltimore, and got on the c diff forum, I am having a fecal transplant tomorrow with my partners donated feces. Sounds disgusting I grant you but it has a 90% cure rate.
You can also do this as an implant at home as an enema, there are a few accounts of that on the c diff boards of the protocol and one blog I think if i remember. generally it consists of a cleansing enema, then mixing the donated material with saline, filtering it, then filing an enema bag and giving yourself the enema, holding it as long as you can.
My doctor says 45 minutes is enough, others take immodium and go to bed, try to hold it over night.
It's pretty simple but you may need repeating, you just need a donor who has no infectious diseases (HIV, HEP, C diff) and is willing to provide you the material when you need it. I aso emailed a woman who did it herself- she had to perform 10 or more home infusions but is c diff free. So I know of two others with lyme who have cured themselves of c diff using either vacno or fecal transplant.
I decided to first try it with a doctor in the hopes that the farther the material goes the more likely it will cure me.
Today i am on a liquid diet then tonight begin the cleanse for the colonoscopic implant.. There are several doctors who will do the procedure around the US. If you go to the c diff discussion board there is a list of doctors, I emailed one to get the name of the docotr I am using in Baltimore. I am sure you can find information to help you and maybe a c diff expert doctor in your area I am sorry that you are going through this. I know what you are going through. Good luck, take care.
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