relapse

[klt03301]

have a fever for the first time since this started...good luck to you all and thanks so much for responding.

[ClDif]

How are you doing now Karen? Hopefully not still holding out with a fever??

[cindym]

KLT- Please read my case history as you will see that my colonoscopy showed a healthy colon and I was taken off vanco in the beginning and every time totally relapsed and was put back in hospital near death for 5 months. I have tested positive only a hand full of times in the last 6 years and each time was totally off cdiff w/ p.colitis and knocking on death's door. In my opinion--------YOU HAVE CDIFF and you need to be on meds. I believe the dosage was too low for you at 125 mg and should have been upped to 250 mg 4times per day. Do not let it ride on long as you will become sicker than sick..........TRUST ME! I am still on meds at low dosage and every time I get to one per day.......BANG RELAPSE. Once you are controlled by vanco (and it could take up to a month as it did me) you can then try Primadolphilus Reuteri by Nature's Way to build back up your appetite and stop the weight loss and will help you to gain it back. I have tried ALL PROBIOTICS and the reuteri is the ONLY probiotic that did anything at all for me that was noticeable. I was the first to try the reuteri and after that time Nancy and a few others were helped by it also. Taking it at intense dosage (3 per day) and after 2 weeks it felt like the poison in my system lifted and I felt hungry. It actually saved me I think! If your current doctor will not give you meds--------FIND ANOTHER DOCTOR QUICKLY..........take him articles about testing negative and still having cdiff. Take him a copy of my history if you want. I believe with all my heart you are still dealing with THE BEAST. Good luck!

[klt03301]

I've just come back from my Mother's today. She has dial up and I didn't want to tie up her phone line. She was so wonderful. I've not valued or appreciated her nearly as much as I should have in the past. We've gotten much closer and that makes me feel better. At her house, I graduated from the brat diet and was able to include brown rice, chicken, lima beans, scrambled eggs, grits (yep, I'm in the South :-) and other things that I was afraid to try. She cooked every meal for me. I don't know what I would have done without her. I have learned no green beans and no potatoes for me. Weight at 104 and did not lose while there, which is pretty miraculous!

Here's where I'm at now: Seeing a naturopath, getting ultraviolet light and oxidation IV's...he believes it kills the bad stuff. My pancreas, liver, and small intestines are stressed, but my large intestine is fine. Go figure. Taking colloidal silver, Infection E.G.A., LiverAid, Endo Gland F (my adrenals are really stressed) , along with Vitamin C and Enterobiotic Plus. They believe I don't have c diff and he does treat people with c diff...they think I have a parasite in my small intestine. Just sent off my stool samples to their lab of choice. All blood work, and I mean tons of it, have come back normal, so not getting nutritional IV's. My gums have stopped bleeding. My GI and PCP are still not helping with whatever is wrong. I've tested negative so many times now for C Diff and parasites, so they take their time in returning my calls or even making an appointment for me. That's why I chose the naturopath. He treated my daughter for something six years ago that had conventional medicine stumped, and she was cured.

Here is the trouble I'm still having: NO D, thank the Good Lord, but still green w/that odor. Severe bloating, lower abdomen tender to touch at times, severe nausea right before or after BM. Not always, but usually. Still no appetite, so I force myself to eat. SEVERE FATIGUE and brain fog, along with depression. Am now on antidepressant.

I felt much better physically at my Mom's, but I felt I was stressing her out and she has high blood pressure. She would cry every time I did and I dont want to do that to her. I'm going to try it alone again for a while and see how I do. I was even walking while at her house. I can do that here, though, and I'm going to try to eat better. The biggest problem is the fatigue that doesn't permit me to shop/prepare foods when I need to and getting lost in the grocery store b/c of the brain fog. I'm not even kidding. I've been off the vanco 125 mg for 12 days now. It didn't do squat for me. I'm ordering the stuff other people have used to increase their appetite and helped them to stop losing weight...can't remember the name but going back to maryinflorida's success story post to find it.

So, my question is...is it still c diff or IBS? I had IBS prior to this, and this is SO much worse. I never bloated like this, or had the really awful nausea before and after BM. Also, my fibromyalgia has flared.

Again, my sincere thanks to everyone who has responded and my greatest appreciation for the administrators, contributors and every other person who is on this site. It's kept me sane (somewhat :)

Hugs to you all....Karen

[klt03301]

Has anyone else had these?: severe fatigue, to the point it's difficult to shower or even prepare food, body pain, headache and mental fog? The pain is so bad that when it hits, I'm down for a day or more. No swelling or redness, just all over body pain. I had IBS and Fibromyalgia prior to C Diff, but this body pain and abdomial sorness is so much worse!

Still have severe bloating with painful BM, sore intestines afterwards. Eating OK, but still losing weight. I've been taking the Primadophilus Reuteri for several days, and I also take another probiotic every night (2 capsules) that my GI told me to get.

I've had to be off my naturopathic remedies for several days to prepare for another stool testing. The office erred by checking off the "short" test as opposed to the "long" test (testing for more stuff). The first test came back saying I have some type of bacterial pathogen in my stool, but it IS NOT C Diff, and they didn't identify it because they were not asked to. WTF?! ARGGH!!

Off my vanco for 27 days now. No D, but stool is soft, fluffy, and still has that odor. Test after test for C Diff is negative. I'm thinking there's something going on in my small intestine, possibly still C Diff which keeps coming back negative. This thing is slowly killing me. I could handle the stomach issues and believe it's PI IBS if the other symptoms weren't there. Something is still very wrong, but no one seems to be able to figure it out yet. Any help would be greatly appreciated. I'm back home but my Mom keeps asking me to come back to stay with her until I am well. Don't want to do that, as on my down days she suffers right along with me :( It upsets her. Thanks, guys, and I continue to pray for everyone who suffers from this.

Karen

[cindym]

Some of the supplements could be posing you problems! The severe fatigue has been one my worst symptoms through the battle with cdiff. I take b12 shots and it helps tremendously. Yes, I have had times where I will take showers and wash my hair but before I can dry it I have to lie down and rest for 5-10 minutes and then do it. It gets better. The reuteri takes about 2-3 weeks to help make you feel better (or at least it did me). I took 3 per day for a long period of time. I am living proof that it will not rid you of the cdiff but it totally helps with stopping the weight loss and restoring your appetite. It also seemed to make me have more energy. You might talk to your doctor about possibly going off some or all of the supplements and adding them back one at a time to find which one is the culprit in making you have stomach pain. I know that supplements can do that because ANY probiotic other than the reuteri did that to me. Also vitamins and calcium. Hang in there.......things will get better.

[klt03301]

Thanks Cindy. Since I posted I've noticed the bloating is not a problem anymore...went off the naturopathic meds to get a stool sample. Maybe it was one of those or maybe it just cleared on its own? Also, yesterday I had the best day I've had since February. I wasn't fatigued or in pain. I even went to the gym for 40 minutes! I felt almost normal. Today I'm feeling OK too. My appetite is back, especially for breakfast :) I think the reuteri is already helping me. Thank you so much for suggesting it! I think I'm just going to have good and bad days, but it's incredible how quickly and unpredictably you can go from one to the other. I have enough energy to go to the health food store today and visit my grandson. Thanks again, so very much!

Karen

[jaspore]

Karen, am glad to hear you're having a better day.......

Was surprised that so many of our symptoms sounded identical!
Before C Diff, I had IBS, but not Fibromyalgia.........
and other than that, and the weight loss, we're about on the same track.
Sine you are near me, and we have such similar symptoms I really want to follow your progress.....
I did finally get a call back from Durham G, and have an appt with Brazer on June 4. No one could move me up from that..............
I was only a "black" code?
He will only consult on that day.........and I'm just wondering if I should wait that long, or look elsewhere.
Four occurences in 6 months, and feeling like the 5th is on its' way...the fatigue is just overwhelming, and I KNOW that adds to the depression....these gorgeous sunny warm spring days that I would usually be gardening or painting, and I'm on the computer learning all I can, or lying on the couch, or wondering just how in the HECK am I going to pick up the kids, cook dinner, etc..........................
I have a LOT of brain fog too! It reminds me of when I had Estrogen Dominance about two years ago. I hit the gas pedal on the lawn mower instead of the brakes, and rode high speed off the 6 ft bulkhead into the Neuse River! Try to explain that one to your kids!!! ha
Was only bruised badly, and my pride was in shambles...............
I will be driving down the road now, and forget how to get somewhere.....I find myself in the wrong lanes..........stupid stuff!
Can C Diff get on your brain? I think I have brain D!
Hope you're not offended....I try to have humor throughout............
When I can remember................................................
I'm 49.........I think.