Does it ever end?

[Rlcross]

Hi guys! Took your advice called the dr asked about something for the symptoms mostly the heart beating hard and palpitations I thought maybe propranolol haven't got an answer yet.... But it is a no on any antibiotics or any thyroid medications I've made it this far the 16 the will be here quicker than I think can't wait!

[beth22]

I take atenolol for BP and rapid heartbeat, but when I had the rapid and irregular heartbeat from the c diff, it didn't help much, although some I guess. I think it is the toxin that does it. But, thyroid can do it too. When I originally was prescribed the atenolol it was because my thyroid was causing the fast, irregular beats. Ask your doctor about a beta blocker when you go.

[Rlcross]

What if you go to the transplant dr and for some reason you test negative after testing positive for a year?

[Bobbie]

Be sure to ask for PCR test - one of most accurate but does have a few false negatives/positive (about 92 to 94 percent accuracy. If you test negative, ask to be tested again.

[pinkangel]

I know my fmt doc did not even test me. He looked at my history. I think when you have had cdiff so long they go by symptoms.

[Rlcross]

I hope so it scares me to be so close I guess I am just thinking of what could go wrong I don't want to be so close and then be turned away if for some odd reason it says negative... I guess just being paranoid tonight.

[beth22]

Get copies of your old test results that show positive. The protocol is that after a certain amount of positives, they will do the FMT. I forget if it is 2 or 3, but ask your doctor's office to fax you copies or go and pick them up and bring them along to your appt.

[Rlcross]

Any suggestions.... I feel like I am going downhill going to the bathroom a lot up all night, tired , weak , dark circles under my eyes, heart beating hard, but I am afraid if I go to the er they will admit me have already spent 9 weeks over the past year and my appt is coming up don't want to miss it... Any thoughts?

[justme]

RIcross: I cannot imagine how frustrated you must feel, especially being an nurse. I am still astounded that so much about C. Diff is unknown or just plain disregarded. Any underlying condition can exacerbate the symptoms and recovery from this awful disease. I live in Hawaii and we have very few cases of it here and most doctors don't seem to have a clue about what to do. I was fortunate that my PC doctor was a young guy that had a suspicion of what was wrong when I had had so many antibiotics previous to my symptoms. He tested me right away for C. Diff and started me on probiotics. I took a super heavy dose of flagyl - 4 x a day for 7 days and began the BART diet. The main symptoms of watery stool did abate and I was just left with lots of quite agonizing pain (I cried every night). I still have colitis and IBS and I've been in recovery for 16 months, but I take Tylenol and watch my diet pretty closely. I also lost 40 pounds within the first 6 weeks and I am old (70 in February). I would suggest avoiding raw vegetables, dairy, and sugary foods and increase the carbs and fruit. Take Metamucil to bulk up our stool. I have no expert advice and am just basing my suggestions on my own experience. But, like others have mentioned, you must find a doctor who cares about you and can investigate ways to help you recover. As others have suggested, there are other medications and procedures that are being used to fight this monster. Good luck and take care.
Aloha,
Anne

[beth22]

Have you ever taken Questran (cholestyramine) when you had c diff? It binds up the toxins and makes the stool more solid. It doesn't cure it, but helps to carry out the toxin so it does not damage your colon. You could call the new doctor's office and tell them what is happening. Either they can get you in early or order a test or start you on meds. I would call and let them know.

[Rlcross]

Now I'm running 101 fever...

[ResearchGrandma]

I know you wanted to avoid additional antibiotics, but maybe you need some to control C. diff until you can arrange for a FT. If you are still running a temp in the morning and having D, I would not ignore these symptoms with your known positive test for C. diff.

[justme]

I forgot to mention that I went to an Infectious Disease specialist after I finished the Flagyl and he told me that as long as I was free from the symptoms of watery diarrhea 3 or more times a day and had solid stool, the C. Diff was probably no longer in the infectious stage, but was in the colonization stage. He said any test I had would still be positive until my body's good bacteria had contained the C. Diff bacteria, although the C. Diff bacteria would probably always be there and could become infectious again if I took antibiotics that would destroy too much of the good bacteria. As a result, I did not get tested for C. Diff until I was in the hospital for a TIA a year later. I tested negative for C. Diff toxins.

When I first got the C. Diff, I took very high dose OTC probiotics for several months until they started causing a lot of gas and I suspected my own good bacteria was dominant once again. I experimented with my diet because every doctor told me the same thing: everybody is different and what their bodies can tolerate is equally different. I went gluten, dairy, and red meat free and sweets free for about three months to try and balance my system. I put red meat and gluten back slowly, still can't tolerate raw veggies, dairy, sweets, and spicy food very well. Because of what the specialist told me, I didn't put much stock in the testing and just took control myself. It eventually worked for me, but you might have something else going on.

Anne

[beth22]

I would request a test not only for c difficile, but a stool culture and one for ova and parasites. If nothing shows up, you may have a virus, but best to check it all out. If you can't wait for test results, you may want to go to ER and have them take samples there and get you started on some meds if you think it is c diff. Don't ride it out though. 101 is not a low grade fever. Call the doctor in the morning or go to ER or urgent care.

[justme]

I agree with Beth. A fever of 101 could be an indication of an infection or it could be a virus and nothing to fool with. My husband has an intestinal parasite he picked up in Micronesia. He has a recurrence two or three times a year and runs a fever and has intestinal flu-like symptoms. He takes the Flagyl which controls it, but doesn't cure it. It kills the adults, but the eggs burrow into the intestinal lining and can recur (not unlike C. Diff). Take care. I hope you get help and find out quickly what is happening in your body. Keep us posted.
Take care,
Anne