ACK!

[Xaniac]

I need to let it out - this forum is such a great idea.

I just finished up my first 10 day dose of Vanco (previously on Flagyl for 10 days, but couldn't tolerate it for longer, so they switched me). I relapsed right away, and ended up back in the ER for low potassium and magnesium. I hate the ER! I don't want to go back there! This time I had palpitations (I've had these since I was a kid, but not during my whole 9 month bout with C-diff!). So I stayed home from work (again) and called specialists in Iowa City to see if they could see me (sure, in the fall), called my GI doc for advice (eat a banana or go to the ER - and they took 8 hours to call me back), and called the ER where they said "Please call if you have continued symptoms" (sorry, we can't give advice ...). So I made an appointment at Mayo Clinic for next Wednesday. Now I'm just hoping I can survive the weekend (figuratively, not literally). Not to mention that Mayo is not covered by my insurance - as if I haven't already paid enough for this! And the time commitment - 5 days. It's great that all the testing, etc. will be done at once, but I've already missed a ton of work.

I don't want to go through this again - I know what the problem is, but I can't find anyone that can help! I'm so frustrated!!!! It's amazing - the state of health care is atrocious!

[Sheila1]

xaniac, you're so right and so understandably angry!

What's the most atrocious are the many doctors who don't care enough about their patients to try to find a solution, this is especially true when the diagnosis is KNOWN but they can't be bothered to call someone like one of the cdiff experts and get info. I know for certain several of the experts are more than willing to email or fax suggested treatment plans for difficult cases.

Do you have a family doctor that would read info if you gave it to him/her? I had my family doc refer me to an Infec. Disease doc and got a great one (I called around town first and found out who had exper. with recurrent cdiff first). Have you asked to try any combination treatment in the literature? You shouldn't have to travel for hours to get proper treatment...(though some have had to do just that).

I'm curious as to what dose Vanco you are on? Literature suggests from 125mg up to 500mg, most are started on 125mg. It seems from most of the recent posters that 125mg. isn't a high enough dose these days -- I'm not a doctor, it's just an observation. I don't know if it's because they have the more virulent strain or their own immune response is weaker or what, I've just noticed the numbers and lack of symptoms resolving... (taking into consideration that it's the 'problem' cases who continue to post, those that get well on 125mg. may just never return to the site).

You could always consider reporting your doctor(s) to the AMA if they refuse to help or find you help. If we, the victims, can find treatment info. the doctors most certainly can.

I'm so sorry you're going through so much while dealing with cdiff - it's mind numbing to deal with all by itself, Lord knows no one needs all the other problems piled on.

Don't know where you're located, but maybe some others are on here in your area and could suggest someone?

Just trying to give you some ideas to try - wishing you better real soon!

[Christina]

Xaniac,

I know how you feel and you have every right to be frustrated and angry. I have been in the same situation as you are and it is extremely stressful. I ended up having to leave the state for treatment due to the fact that my former GI Dr. sent a letter to every GI clinic in my surrounding area asking them not to treat me if I went to them because I did not have C-diff. People like me (age and health wise) don't get C-diff never mind recurrent C-diff and C-diff never survives a round of Vanco, etc., etc. It was also sent to my (at the time) PCP and another one I had seen previously. I ended up filing a complaint w/the state medical board and the case was reviewed. My response back was that the Dr. did not do anything wrong even though after the case he left the state and no longer practices here. Needless to say I can't go to a GI Dr. here due to this but I am very thankful for the Dr. I have and wouldn't go anywhere else even if I have to travel quite far.
It does not take a C-diff expert to pull up treatment protocols online. There are several medical websites used by Dr.'s and hospitals w/ protocols recommended by the experts that are just a click away. If your Dr. is not willing to check them out then it may be best that you are going elsewhere.You need someone to work with you not against you.

I wish you the best of luck and please keep us posted.

[Sheila1]

Christina, my mouth dropped open at that - I can't believe your doctor did that. Seems like there would have been a lawsuit in there somewhere...... I guess in today's times with the HIPPA laws there would have been, he couldn't have sent a letter like that around without your sigature allowing it. Geez. I hope that doctor got, or gets, cdiff...... oh my gosh, just thinking about how I would feel if my doc did that.... they would have had to haul me away from his office in handcuffs!

I do believe no one has gone through what you've gone through...if there's a worst story, yours about has to fit the bill.

I admire your strength and determination - you're a WINNER!

[Christina]

You know how I found out about the letter? I went to my PCP (who no longer is) w/continued symptoms. This was after I had went Boston for a second opinion since, I knew at that point I was not being told the truth. Well my PCP started telling me basically I was FOS and that I did not have C-diff. She then said she received a letter from my Dr. in Boston saying that if I were to complain of having C-diff rather than treat me I was to go to the Dr. here for a colonoscopy. This was not anything close to what was discussed at my visit in Boston. I knew she was lying. She had to leave the exam room and when she did I looked at the paper that was on the top of my chart. It was the letter from the Dr. here so she was really was lying. I then went to the hospital here and obtained a copy of my records and low and behold there was the letter. CC'd to every Dr. I had been to here plus other GI practices in the area of which there are very few.The letter also recommended they send me for a psychological evaluation if I continued to say I still had C-diff because I did not have it. Forgot too, they were asked not to treat me even if I tested positive because the only way to know for sure would be for them to do a colonoscopy and find PC. If there was no PC then I didn't have c-diff either. End of story!!!!!

Watch out Atlanta, he's practicing in that area now!

[Bobbie]

These stories are, unfortunately, not that rare. When my son had C. diff. at the age of four and a half, I took him to the ped. who refused to do anything so I took him to the ped. GI who hospitalized him immediately. (He was in a coma for 3 days). The ped. never came to the hospital & dropped my sons as patients. (We'd been going to him for over 12 yrs.) I had a h ... of a time getting a new ped.

When I had C. diff., I called one GI on call at night as I was in so much pain. I had gone to his associate who chided me for taking Vantin -- as though I had prescribed it for myself. The doc. on call said,"If you have recurrent C. diff., I can't do anything for you" and hung up.

One former poster (who was in the health field) had to move from one state to another to get help for her daughter who had C. diff. plus immune problems.

The medical profession can be a very closed society as many of us have found out -- the hard way.

Those of us who are old enough remember the TV show "Dr, Marcus Welby, MD." He was your friend, cared about you, & could diagnose and "fix" anything. Unfortunately, he was fiction. Many of today's docs. are more concerned about being sued than treating patients -- and some rightly so. Many have the attitude, "If I haven't "fixed you, it must be in your head." C. diff. is still a poorly understood disease. Thank God for the few experts like Dr. Borody, Dr. Allen, and Dr. Kelly.

I went to Dr. Allen (who saved my life twice when I had C. diff.) the other day. Because I hadn't been in for almost 2 yrs., they wanted me to fill out 8 pages. I have everything on computer so only filled out what I hadn't already covered & attached my own forms. He spent 10 min. with me before he rushed me out the door. Will I complain? Probably not as I am terrified of losing him as my doc. (Well, I might send his nurse a FAX "gently" complaining.) The office's policy, however, is to book patients 10 to 15 min. apart. I do not want to "p... him off, however, as I might need him again, & he was wonderful to me when I first saw him & was the only doc. who believed I still had C. diff. as I had few positive cultures but was on Vanco. during most of these tests. Duh!!!!(Was diagnosed with pseudo. colitis by colonscopy originally.)

Where are you, Dr. Welby?

However, if we think the medical care is poor here, you should see it in the UK & Canada.

[Xaniac]

Just knowing that there are so many of us out there makes me feel a little better.

I'm anxiously awaiting my trip to Mayo - a guy in my office went there for c-diff and got 6 weeks of Vanco, and was cured! He also said it was like no medical experience he had ever seen - responsive doctors, efficient labs! The doctors even called him back within the hour after they started treatment. I can only imagine - I think I'll feel like Dorothy in the Wizard of Oz.

Good news is that I'm doing a little better today and can see the light at the end of the tunnel. I am going to be visiting my local GI again today, and I'll be anxious to hear if they want me to do another test before prescribing anything (my guess - yes - and probably rightfully so, but that means no meds until Mayo). If it weren't for my potassium levels, I could deal with this a little better! But the doc just doesn't seem to have any advice for this other than "Go to the emergency if you feel like your levels are low." I looked online for a home test kit, but nothing!

Someone asked what dose I was on for Vanco - 125 mg 4 x per day for 10 days.

Thanks for all the good wishes!

[Bobbie]

Xaniac,
Hope you have a good experience at Mayo. I went years ago (l993) & did not have a good one. I went on "standby" -- even though I knew better.

Be sure and get all your medical records -- esp. copies of lab. results that were positive. Call & doublecheck that you are getting a GI (NOT a resident) who is versed in recurrent/relapsing C. diff.

Remember, try to stay off Vanco. for 10 to 14 days (14 best) for most accurate results. From your posts, you already know this.

Good luck.

[Xaniac]

My trip to Mayo went well. My local GI had just called with test results saying negative, but Mayo found positive. I could have told them that ;) I ended up on 10 days of Xifaxin (sounds like this is relatively new treatment - not much on the board about this one) at 1200 mg per day. The good news is that they checked everything else out and it doesn't look like I'm suffering any other side effects (colitis, etc.) My local GI said I had diverticulosis, but these guys said no. It was very organized and the most pleasant medical experience I've ever had. Now I'm waiting on the results - good health here I come!