It's Duke, again...

[nappinduke]

Have been trying to leave you folks alone nd quit complaining, so I suspect my original topic and the many postings thereunder have been "locked". Anyway, the current question is whether or not there is any concensus among you as to time / days between completing a course of Flagyl (the second course) and when one might hope to feel "fine", again. I finished the second course last Wednesday, and Thursday and Friday were relatively good. Since Saturday, however, I've had a slight headache, slight intestinal cramping, that strange, generalized "tingly" feeling, and about five or six odiferous but (loosely) formed bowel movements per day. The GI that I saw was just as indifferent as my PCP, but he did say to call if I thought that I wanted / needed to try Vanco. Should I give it a few more days, or go ahead and call him??? Sounds like a stupid question, I know, but I'm just as wary of him as I am of my PCP. For now, however, they're all that I've got to work with. As always, thanks much...
---Duke

[Sheila1]

Hey Duke, good to hear from you again, just wish it was celebratory news instead! You can always try Bobbie's 3 Day Rule.....but I'm of the opinion that no one, absolutely no one, knows your symptoms like you do and if you feel "it's" coming back then it's best to get back on some medicine asap. That's my personal, non-medical opinion. It's better to start the medicine when you've slid 1/2 way down the mountain as opposed to starting back over at the very bottom.

As to when one begins feeling 'okay' again...I don't know. I've finally been off all meds since Dec. 1st and I still don't feel normal and have been in a "hovering" kind of relapse stage since New Year's weekend - very odd, 4 or 5 of the 'usual' symptoms for me but getting no worse except a day here and there. It's not so bad except I constantly kind of feel as though I'm getting over or coming down with the flu sorta (as in, that not quite well but not quite sick feeling).

I kind of adopted the theory that if one is getting worse instead of gradually better - then it should be investigated for further treatment. But I'm not a doctor.

Your best bet is to call the GI you're working with (I know...) and see if he thinks you should be on more medicine. Just don't let yourself get too sick again - you've come a long way!!

I'm almost afraid to ask - how is your cat?

[Bobbie]

Duke,
Since we haven't heard from you, we thought you were doing better. All threads are "locked"when they become too long. Just start a new thread. This was not done to stop your posting -- it's always done with long threads because they become too cumbersome.

You are not "bothering" us -- this is why we are here. We've had to start a "one post a day" policy (you can ask multiple questions in the post) & establish a "netiquette" policy because of frequent, repeitious posts from some. This is understandable because everyone with C. diff. is upset, but it's too much for the mods. to handle. We encourage everyone to let us know how they are doing.

You could still have C. diff. (you can relapse a day or so off medication up to several months later) or you might have IBS -- approx. l out of 5 develop it after a bout with C. diff. If you can wait, testing would be more accurate if you are off meds. (Flagyl or Vanco.) for 10 to 14 days. See FAQ-IBS & FAQ-Three Day Rule. The Three-Day Rule isn't scientific or medical -- just something I "made up" when I was struggling with C. diff. & wasn't sure I was relapsing.

If your symptoms become worse, do call your GI. I know you aren't pleased with him, but I'd call him over your primary care doc. Vanco. might "do it" for you. It appears to be more effective against the newer strain of C. diff.; many who don't respond to Flagyl respond to Vanco. It is very expensive so check your insurance policy. It is also possible to relapse on it.

By the way, I contacted the site owner, & he suggested a way to contribute to the site. I'll post more when the details are complete.

Don't give up. C. diff. is a very discouraging disease. Read Success Stories to see all those who "beat it" & some of the subtopics in FAQ such as Coping with C. diff. You will recover -- honest! In the meantime, try to keep busy. C. diff. can rule your life, but it doesn't have to ruin it.

[Sheila1]

OOoops!!

You can always try Bobbie's 3 Day Rule.....but I'm of the opinion...

Sorry Bobbie and Duke, in my rush to submit this morning before jumping in the shower I didn't catch my wording - I think Bobbie's 3-day Rule is a an excellent rule-of-thumb to go by.

Instead of saying "but I'm of the opinion..." What I actually meant was, if you feel sure it's coming back call the doc....if not sure, try the 3 day rule.

The hazards of the hurredly written word and sloppy proofing..SO sorry!

[nappinduke]

Sheila & Bobbie,

Thanks so much for your kind responses. I'm really so impressed with the service that this site provides. It, and this whole experience, has given me a lot of thoughts in re new professional direction. After years in KY as an LCSW practicing adult counseling and pychotherapy, I knew that once in FL I didn't want to ever again deal with office overhead, liability insurance, state board regs and rules, CEUs, quintuplet copies of Dx, Tx, and progress notes, etc., etc. Was interested in perhaps some sort of advocacy work, and in providing informal practical and emotional support services to persons in similar circumstances to me (ie; sick, single, new in town, no established family, friend nor medical support systems, etc.) in the 1200 home, "55+" development where I live, beforehand. (I was 49 when I bought-in here. Fed and state regs require, per age and housing discrimination laws, that communities such as this allow a certain percentage of the community's population to be outside the age rules. They saw me coming at 49 with no spouse nor kids, and I was in FAST!) Anyway, the point is that a place like this is inundated with elderly folks who must find themselves in need of the assistance and support that I've needed.

I'm actually a bit "giddy" tonight. Earlier today I got with my doc friend in KY and conference-called the local Gastrentarologist. Smart move; received full cooperation, information, and RESPECT! (Sheila had perfectly articulated where I'm "at" currently; unsure on a day-to-day basis as to whether I'm getting better or worse) Upshot; tonight I started a 14-day, 125 mg., 4xday course of Vanco. Cost before ins. was $975.00. I don't care, the the past three months of bills are already through the roof and all I care about is getting in a final, all-out, "Muhammed Ali knockout punch" on this miserable illness.

Thereafter, I can begin to explore some of those ways to get out and educate, advocate, etc. about C.Diff and the plethora of other rapidly spreading newer, more Tx-resistant viruses and bacteria that are now so easily globally carried / transmitted. I'm not worth a hoot with computer technology, etc, but if I could do things such as informational / educational presentatations as to various mutating illnesses and growing epidemics, hygiene and nutrition, providing personal practical and emotional support services etc., etc., I could get quite motivated about this. Lots of possibilities to be proactive in addition to making $$ contributions. Somehow, sooner or later, and if you're awake to it, good seems to finally come from bad.

Anyway, I again ramble. I'm simply excited about the Vanco, and am confident that it will finally do the trick and give me back my life. I'll keep you all apprised, wish each and every one of you health and wellness, and THANK YOU, again!!!

---Duke

[Bobbie]

Duke,
Hope the Vanco. works for you. It is often preferable to Flagyl.

You have a great idea to combine your personal interest in C. diff. together with your professional knowledge to counsel people who have chronic illnesses. Wish we could find something for you re. C. diff. You might try contacting hospitals & doctors & offering your service on a trial basis & then for a fee.

I would like to conduct national handwashing seminars. Have you noticed how many physicans/nurses/lab techs. do not wash their hands -- or do not wash them thoroughly?

Cross fingers the Vanco. "does it" for you.

[Sheila1]

Duke,

It's been...19 days....how are you??????

[nappinduke]

Bobbie and Sheila,

Thanks so very much`for all of your replies and inquiries! They truly are helpful and, indeed, meaningful. You obviously are aware of same, as you've both experienced the misery of C.Diff., itself, and the concommitant frustrations with the medical, pharmaceutical, and insurance industries, all of which have apparently caused you to participitate on this site. This is the most helpfully effective grass-roots advocacy group that I've ever witnessed. Everyone that posts here, whether seeking or giving insight, is an example of what our species is capable of doing for itself. Perhaps someday those capabilities will be the normal, common, omnipresent, and wholly selfless center of human dynamics. As trite as it may sound, this is what "do unto others..." is truly about. You are all "good and worthwhile" persons, despite any self-doubt you may experience. You have, and do, "contribute". Always remember that, continue to give of yourself in what may seem to be the most trivial of ways, and your life will always be purposeful and important. Okay, therapy session over, at no charge. Just help someone else smile today.

Vanco is, in my estimation, the "Helen Keller" of medicines. With the exception of (bettering!) weakness, and an atrophied muscular system, I'm very significantly improved. I've been listening to music and playing guitar again, and each of the past four days I've been able to re-enter "the madness" and accomplish errands, etc., for about half of the day. I'm naturally jocular again, and giddy as a kid during the week before Christmas about my prospects. It will hopefully soon be time to begin effecting some of the many ideas that have arisen from this experience.

Bobbie, I really like the idea of hand-washing training. That's needed for so many reasons beyond just C.Diff that a broad market for same is surely waiting to be broached. It seems to me that household cleanliness (especially in re the use of bleach products) and food handling would be natural expansions of such trainings. The ideas only begin there! As you may recall, the group of docs from Vanderbilt U. that my sister consulted with all concurred that the U.S. is "overdue" for a pandemic-like plague of some nature. Why just sit around and wait??? There are people right here on this website that could together organize and activate a grass-roots, proactive, personal and community health awareness movement. AND, because of its' general populace-level origins, same could be effected without causing any "Howard Hughes-like", fearful over-reaction. Just thoughts and possibilities, waiting to be addressed...

Again, thanks to all, and BEST to all. You're an impressive group, indeed!

---Duke

[Bobbie]

Duke,
Glad you are feeling better. Vanco. often is more effective than
Flagyl w/o the side effects.

We hpoe to get some pro-active people together in the spring to organize some type of campaign re. C. diff., hygiene, etc. & will let you know. Any ideas?

[nappinduke]

Back again. Happy to discuss any and all advocacy ideas, later. Was really feeling better, then crashed hard Sat. night / Sun. morning. Still taking Vancocyn, but feel miserable. Also, still concerned that cat and I may be cross-infecting one another. Any thoughts / advice / guidance??? I just can't believe that I've crashed back so hard. Is that "normal"? Thanks in advance...
---Duke

[Bobbie]

nappinduke,
You can have "bad" days while on Vanco. although it is often more effective than Flagyl. If your symptoms don't improve in a couple of days, I'd call your doc. & discuss a higher dosage.

Don't have any ideas yet about advocacy. We've tried many things through the site -- with little luck. I know you have some personal contacts with docs. You might ask them for ideas.

I have read that animals can "pass" C. diff. on to humans & there is some info. on it in Media Reports. I'd call your vet. I don't know if there is a C. diff. test for animals or not. When my dog had similar symptoms, the vet. tested him for "all know parasites" (not including C. diff. --he said he didn't know about a test for it) but put him on Flagyl -- it helped.

[nappinduke]

Bobbie,

Thanks for the reply, and for the info. I counted out my Vanco, and it appears that I may have been missing a dose every two or three days. I keep my Rxs in a 21 day container, but it is divided by day, not by hour (all other Rxs are once per day), hence if I slept in, or for some reason became distracted, I would miss a Vanco dose. As the dosage was relatively low anyway (125mg., 4 x day), I'm presuming that both were part of the cause.

The cat, as I said, remains a concern. The vet is currently culturing another of her stool samples. She initially responded well and quickly to the vet's Flagyl Rx, but once better, I simply couldn't trick her into ingesting any more of the complete course. I imagine that if Flagyl has such a noticeable aftertaste and several side effects for humans, same must both be greatly amplified for pets. The vet is also doing research into cross-contamination, and should have info re all by Friday. Interestingly, with the exception of my M.D. friend in KY, the vet has been far more helpful than anyone else in any medical field.

Anyway, after counting out the meds late last night, I doubled the Vanco dosage, added a Xanax, and slept well all day today. Tonight I have a slight headache, but that's about it. Fortunately (or perhaps unfortunately), I had a follow-up already scheduled with the G.E. for tomorrow afternoon. I'll be fully open and honest with him about everything, but if his demeanor is the same as before, I'm afraid that he'll just be even more unempathic and denigrating this time.

I also again briefly spoke with my friend in KY. I really don't like doing so, as he's busy as h... all of the time, can't really "treat" from a distance, and it just feels usurious of the friendship. Anyway, his main concern is the sterilization of all surfaces in my home. I may have found someone who is quite healthy, and willing to "glove, gown, and mask" in order to bleach-clean every square inch of the house. (Gotta be a business opportunity there for someone. I called a local biohazard / crime-scene clean-up business once, but they never got back to me. I imagine that even if interested in such work, they would be extremely expensive.) My friend thinks that the gown and mask are necessary simply because we all unconciously / inadvertently touch facial orifices, small bodily wounds, etc. throughout the day. He says to be completely protected, as described, while sterile / bleach-cleaning, and then to dispose of all of same, if possible in a med facility's biohazard disposal box. Tangentially, yet interestingly, he said that the E.R. and ICU units at the U of KY hospital are currently under siege by another mutated / resistant virus and / or bacteria. They're not sure yet if it's a virus, a bacteria, or both, but they are completely vacating and sterilizing ("floor to ceiling") areas of each unit until they've cleaned everything and become assured of what it is that's currently infecting everything.

I'll let everyone know how things turn out re each of the G.E., the vet, and the housecleaner, as same develop. I'm still trying to locate a C.Diff. Tx "expert" somewhere to whom I can go to this thing and any forther problems it may have caused fully Dxed and Txed.

I remain interested in working with any of you re some kind of C.Diff. awareness advocacy work. Unfortunately, at first blush, all I can see are confidentiality and other legal issues. It's a profit-oriented culture that we live in, and anything that might concievably affect anyone's bottom-line and / or reputation. In a perect world, Dr. McDonald at the CDC should be free to speak-out loudly about C.Diff. or any other exponentially mutating / spreading virus or bacteria. However, I'm sure that he's efffectively "gagged" per legal and other concerns of gov't., businesses, and public reaction. Consider this site's own very real concerns re giving medical advice / opinions, etc. Still, there MUST be something more that we can do. When my brain can again handle some real focus and concentration, and when my energy returns, I'll be hard on the trail. For now, though, I've just got to get myself completely well.

Sorry to be so verbose. This has just been such an amazing experience, in so very many ways, that I guess I'm getting obsessed. Ultimately, that obsession will be turned into something beneficial.

---Duke

[Bobbie]

Duke,
C. diff. can make one "obsessed." Do think you might be going a little overboard in trying to get a "bio-hazard" team to clean your house, but if you can & it will make you feel better, go for it. If you concentrate on cleaning the bathroom thoroughly with a bleach cleaner (don't forget the door knobs) & wash your hands well, you should be OK.

Skipping several doses of Vanco. could account for your increased symptoms. Also, as I mentioned, you still can have "up & down" days on Vanco.

I agree about a campaign against C. diff. We've done a lot on the site re. PR, & several of our posters were interviewed by national & reginional reporters for newspapers & magazines but little follow-up.)

Several of us are interested in taking it further in the future. You might try contacting your state & Federal reps. & senators re. making C. diff. a mandatorily reported disease in Florida if it already isn't. I tried in KS -- with little success. (See FAQ-Articles Written by Posters.) Even the few states that do have regs., usually have "loop holes" such as not reporting cases that don't require hospitalization. What does your friend from KY say about this?

You are correct -- this is a $$ driven culture. However, because of all the new "atypical cases," we are getting a lot more interest in the medical community re. new meds. & procedures. For years, there was no interest & little knowledge of the disease -- even in the medical community.

We need someone important to develop C. diff. -- & the rest will follow. (The UK site is getting a lot accomplished because the producers of a TV show in London had a father with C. diff. Voila! A personal interest & thus a follow through.)

[cindym]

Duke- I have been playing hardball with cdiff now since 2001. I could certainly use some counseling at times! ha! Depressed? Not me----just sick of dealing with constant ailments all related to cdiff. Wish you lived closer and I would invite you over to join my "misery club" ha! No one
especially DOCTORS can relate to this beast until they themselves have experienced the wrath of it all. It has almost killed me on 5 occasions and most likely will at some point in time........I am one of the unlucky ones that can NOT get over it! I spent my 50th birthday in the hospital near death and now 6 years later (almost) it seems another birthday will come and Mr. Cdiff will still be at the party.
If you decide to do something worth while in educating people and can get adequate acknowledgement--------please include me! Of course we will have to schedule around my good and bad days--------ha! Hang in there as with time it all becomes second nature and hate to say this but "A Way of Life".

[nappinduke]

I haven't posted since seeing the G.I. again last week for several reasons, all irrational. Have been up since early this a.m. whem my cat again became quite ill. The vet said that her stool culture was negative for C.Diff., but I suspect (for numerous reasons) that it ewas a false negative, so I'm still concerned that we may be cross-infecting one another.

The G.I. was a very different person this time around. He noted that the first time he saw me (one month prior) he was dubious re my presenting symptoms, as they sounded more severe than the "hundreds" of "normal" C.Diff. cases that he had seen over the years. Since that first visit, he's seen six others with this "newer and very vicious strain" of C.Diff. He increased the Vanco dosage, and lengthened the Rx to cover about six weeks. I'm now one week into a 14 day course of Vanco 150mg. 4 x day, at which time, if feeling better, I'm to start pulsing the dosage downward over the following weeks. Throughout, he wants me to be eating lots of Yogurt (he suggested "Activa" by Dannon) and taking probiotics. He wasn't specific re the latter, just said to get some from a health-food store, which I've done. Also said to call A.S.A.P. if I felt I was relapsing. He was finally showing interest / concern re the C.Diff., but is clearly unsure as to this "new" strain. He was also very concerned that I lack a spleen, as same means that my immune system is always compromised.

Except for fatigue and continued frequent / loose B.M.s., I'm feeling relatively well. More than anything, at the moment, I'm a bit "down" re my cat, the frustration of conflicting and / or poor info, and the "unknown" of the future. Yesterday, one of my sisters conferred with a G.I. in KY, who said to stop the yogurt as it could ultimately irritate the intestinal tract even further, and to increase the use of the "best" probiotics that I can find. (I have no idea of what same may be.) He also suggested that I contact the same infectious disease doc in KY that my own physician friend had noted. I will be trying to do so this week, and if I can figure out what to do about my cat, I may even go to KY before long (if things don't fully improve over the next few weeks). My cousin in K.C. sees a G.I. in the same group as Dr. Allan, and is trying to contact him re "the broth" and any other possible help. If Dr. Allan thinks he can end this thing, I'll head to K.C.

In any event, family and friends, although all geographically distant, seem to be taking my "complaints" seriously, now. That helps a lot, as does my local G.I.'s sudden awareness and desire to learn (he wanted this site's address, and intends to read-up here and several other places), but the general lack of awareness and / or knowledge, the loss of almost five months already, and the unknown re both the near and distant future have me somewhat "down". The issue of contagiousness is really on my mind. One of my sisters is at my parents' home (45 min. from here) now, but has been fighting back a cold and is afraid to visit. My parents' PCP still wants us to have no contact. It's all so confusingly overwhelming, and the info from the docs is never consistent... makes me want to just sleep, which I'm going to try to do now. As always, any thoughts re docs to contact, pets and C.Diff., and just plain hope will be appreciated.

---Duke