I need reassurance, please (c. difficile and irrational anxieties)

Miscellaneous and Personal Stuff I Must Share
1

I just got out of the hospital today and am suffering from a lot of anxiety for various reasons. As much of a bummer as being in the hospital can be, it’s safe and there are people there I can summon for help who are keeping an eye on me and have doctors/medications at their fingertips and I’m worried about things deteriorating or getting dangerous medically while I’m asleep tonight.

I also don’t know how worried I should be about my prognosis and given my personality, it could be a bad idea to research it and find out exactly what the worst-case scenarios can be.

I know you’re not doctors or anything, I’m just hoping you can calm me down a bit.

A lot of this is caused by lack of sleep in the hospital, by the way. Not much to do about that but get some rest, I know.

Basically, I’m chronically ill and have been being treated for chronic lyme disease. I’m skeptical at this point about the diagnosis, I’ve been on antibiotics in one form or another for several years now, but I thought it probably wouldn’t hurt and maybe it would help. And my doctor really is a good guy who is trying to help.

So I’ve been on antibiotics for several months this time (took a long break after getting a blood clot from a picc line) and was feeling fine, and then -----TMI----- went to use the bathroom and wound up having diarrhea for three hours and getting so weak I had to crawl off the toilet and couldn’t stand up to wash my hands. I thought it was just a stomach virus and dehydration, but the hospital doctors think it’s c difficile from the antibiotics (killing off good bacteria, leaving opportunity for bad bacteria to flourish).

Now, my stool samples and blood cultures were negative, but apparently that’s still the hypothesis and I’m home after being stabilized. I’ll be on antibiotics for it for a week and was told to follow up with my own doctor in two weeks. And I’m feeling much better already, which is fantastic.

All I know is this is a serious, bad news bacteria. No one went into prognosis at the hospital and I should have asked, but I completely didn’t see this discharge coming so soon and the doctors are all so busy and I figured if they apparently think a week of antibiotics and I’ll be okay, then I’m better off believing that too for the mental placebo effect if nothing else.

Of course, not knowing is the basis of a great deal of fear, and the more tired I get and the closer to going to sleep (and unknowingly getting really bad really fast again) I get, the more anxious I am.

UPDATE: my (wonderful) mom is going to sleep in the same room as me just in case which helps a lot, but I still would appreciate people outside the situation telling me everything’s going to be okay.

Thank you so much.

2

I certainly don’t know much about the medical issues you mention, but I hope that you can begin to feel better and find some peace of mind very soon…

Best Wishes—Matthew

3

If it makes you feel any better, my cousin (a nurse, in her late 20’s) has had c. diff a few times and is perfectly fine.

My grandma (a retiree in her late 70s) had it a year or two ago and she is just fine as well.

It sounds like an utterly awful experience and quite scary to be THAT sick and have it happen THAT quickly, but I think it’s common enough that the medical community knows well enough how to handle it and they might not be as worried as you are.

I’m glad your mom is around to help. It’s a great idea to keep someone close if you are scared. Sleep well and get better soon!

4

If your cultures came back negative, you probably just had colitis. Still nasty, still empathy-worthy. I hope you catch up on your sleep, keep yourself hydrated, and feel better soon.

5

I feel like if you were actually sick – confirmed by a doctor and everything! – and that’s what you’re worried about you aren’t really allowed to say you’re being irrational.

I’m definitely not a doctor, but it seems like if you’re feeling a lot better already, that’s the important thing. Bad news bacteria, yes, but considering the way in which it’s bad it is probably the case that your best indicator of how you’re doing with it is the fact that you don’t feel horribly ill anymore. Right?

6

You’ve probably already done this by now but: get some sleep! When I got out of the hospital I went to bed at about 11:30 pm and woke up at 3 pm the next day, around 15-16 hours sleep. I knew I was tired, but I didn’t realize I was near total exhaustion. It’s nearly impossible to get enough sleep in the hospital, there’s too much going on. The old Desiderata line “do not distress yourself with dark imaginings; Many fears are born of fatigue and loneliness” is true - things will scare the crap out of you when you’re fatigued that you’re much more able to face head on when rested.

7

Thanks, everyone. To my dismay, I still haven’t been able to get much sleep even when I relax and clear my mind and think happy sleepy thoughts and it’s getting to the point where I’m really weepy. I feel like I’m starting to lose my mind and I’m still really anxious about going to sleep. I really really wish I hadn’t been discharged or that they would take me back. Fortunately/unfortunately I have to wake up periodically to take medications so at least I can make sure I’m not dying of dehydration every few hours.

I saw a doctor today from my regular local group of doctors who was very reassuring. God I hope I have a really restful night tonight.

8

Sounds like your sleep deprivation and anxiety are feeding off each other: you can’t sleep because of your anxiety, and your anxiety is made worse by lack of sleep. You’re not alone, it’s a common problem. My wife has had similar problems in the past. Make sure you’re telling your doctors everything you’re telling us so that they can address your anxiety issues - if it helps, print this out to show them. Try to relax, try to get some sleep, and call your doctor.

9

As a chronic insomniac, the sleep problems and anxiety you describe are all too familiar. The most important thing to keep in mind is you will eventually sleep despite all the bad feelings you are having. You can’t not sleep because exhaustion will eventually have its way. It’s scary, and feels horrible, but is ultimately manageable. Been there, done that.

It’s the nature of the beast that you tend to dwell on your problems, but finding some ways to focus your attention on something other than your current difficulties can be very helpful. Start by de-escallating your description of your problem, most importantly to yourself. Surely you are not in immediate danger of dying by dehydration. You are under professional medical care, right?

Seek help from a mental health professional if the spiral continues down. I’m guessing you will be fine once you get bored with being sick. Boredom is the anti-anxiety state of mind. Try re-reading some favorite old book.

Best wishes for a speedy recovery.

Walt

10

I apologize if this post is not the reassurance that you are seeking. Also, IANAD, but after you’re feeling a bit better, I strongly advise that you seek a second medical opinion in regards to the symptoms and illness which you feel might be manifest from, “chronic lyme disease.” Try looking up an infectious disease specialist in your area or a rheumatologist if you have joint complaints. A good family practice or internal medicine doctor can also be an excellent resource in trying to sort some of these issues out and provide referrals.

Long-term antibiotic treatment for Lyme infection is not supported (in fact, directly contradicted) by the Infectious Disease Society of America’s guidelines on Lyme Disease. Here’s an excerpt:
http://guidelines.gov/summary/summary.aspx?doc_id=9537&nbr=005085
"…There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (>6 months) subjective symptoms after recommended treatment regimens for Lyme disease (E-I).

Therapeutic Modalities Not Recommended

… long-term antibiotic therapy, anti-bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see full text and Table 5 in the original guideline document) (E-III)."

Antibiotics are not toys and they have the potential for very dangerous side effects; it is not unreasonable to seek an additional qualified professional medical opinion before continuing long-term treatment with them.

11

Thank you very much, everyone. I got a decent amount of sleep last night and feel much much better. Hopefully I’ll be able to manage the same (ideally better) tonight. I have a follow-up with my doctor on Thursday and I’ll definitely ask about anxiety (and sleep, if needed) treatments. I’m still anxious about going to sleep tonight, but I know I can handle it and that I’ll be okay.

Thank you also, threemae, for your post. I’ve come to be skeptical about this lyme disease business as well, especially in my case, and there’s no way in hell I’m going back on antibiotic treatment after this scare.

I’m a little angry with myself too, because I’ve known for some time now that there are doubts about chronic lyme disease and that long-term antibiotic treatment is nothing to take lightly. I just felt maybe my doctor was right (not the doctor I’m seeing for follow-up) and given that I’m quite debilitatingly chronically ill and don’t really have any other hopes for anything resembling a cure, I should keep undergoing treatment just in case. I feel pretty stupid for doing that, especially given that I was in the hospital a year and a half ago with a blood clot caused by a picc line used for antibiotic treatment. That was a huge lucky escape on my part and should have been warning enough.

I can only hope I’ll make a full recovery from this and haven’t caused irreversible damage to myself.