Possibly back on antibiotics (help)

[trob25]

Hi all, in a post from two weeks ago I indicated that I thought I might be getting lyme disease again, the same disease that caused my C-Diff indirectly because of the antibiotics I had to take to combat it. Well, I went to the doc last Friday for the blood tests and like magic, over the next week it all went away, the arm aches, the sweats etc. and I just figured it was a fluke. Well, that world came crashing down at 8:30 a.m today when my doctor called to tell me I tested positive for "early stages of lyme" again. Not from another tick bite I'm certain, probably a relapse if at all.

Not wanting to believe this (I did get a false positive with lyme once) I forwarded my test results to my old lyme specialist (who is also an ID Doc) to double check. If he still thinks it's lyme, yours truly will be on two weeks or longer of something, hopefully Amoxcillian, but it could by Doxy, the killer of all killers.

I'm about to pass out from fear, I can't think straight, I'm just losing it over having to possibly take antibiotics again. I'm only 9 and a half months away from C-Diff that is not long enough! I will load up on probiotics if I have to take these, but I don't know if it will be enough. I just don't know what to do. Hopefully my doc read the tests wrong or they are wrong as I am no longer symptomatic, that's all I can pray for.

[trob25]

I had the doctor paged after he failed to return my call today. Guess what? He forgot to read my damn test results!!!

But, he indicated that people test positive for lyme for years after they originally have it and it's gone into remission, so let's hope that's the case here.

[beth22]

So sorry to hear that Trob. I do remember reading that after you have Lyme you test positive for a long, long time, possibly always. Is there not another test that they can do???

Beth

[Vikingjeff28]

Trob, it is so weird to be on a board where a common fear is shared, antibiotics. We all fear them like the plague. All you can do is take them if absolutley medically necessary, load up on probiotics and if it happens(which I pray HARD for you it won't) then treat it. I have come to the point where I get mad at it and attack it because laying in fear makes me miserable. Anyway, here is prying all will be well and this is a false alarm! GOD BLESS.

[trob25]

Re: the tests, there is a more detailed one the lyme specialist can order and I may request that if this test still appears positive.

And Vikingjeff, thanks for the prayers, I need them! I eventually get to the point where I get mad at the illness as well, right now I'm in the scared, helpless phase, but eventually I get so angry, somehow I think it helps me get better lol.

[Suezer]

I hope it all works out for you Travis. I know you say 9 months post c diff is not enough, but I think with all of us we will never be far enough away from it to feel safe again,sad but true. Lets hope they actually do provide us with a Vaccine as soon as possible, it would be a blessing.

About being angry, I think in small degrees it is healthy and normal. I feel anger quite often at this illness, and the fact that those who suffer with it and its after effects, got this way from taking a medicine that was supposed to help us-not harm us.

I will keep my fingers crossed for you!

[anlockwood]

I am so so sorry. My mom also had lyme disease and if I remember right I believe you can test positive for quite awhile but don't hold me on that. I will put you in my prayers. Let us all know what you find out.

Amanda

[beth22]

I'll be praying for you too. If your test is inconclusive maybe you should just get the other one. I wonder why they didn't just run that one to begin with knowing that you already had the disease??

I know what you mean about getting angry. I do too a lot of times, especially because I got this stupid illness because I was trying to help someone else, namely my mom who was in the rehab hospital and no one really told me the dangers of it or how bad it could be.

Would be great to get that vaccine soon. Roy - you're in UK - that's where they are testing it - in the nursing homes apparently - a 600+ person trial. Have you heard any mention of this in your newspapers there?

If you do have to go on ABs, my friend who had c diff took doxycycline twice without a relapse and the doctor who did my infusion yesterday gave me a list which is a little different from the one posted in FAQs on which tetracyclines are listed as safer than amoxicillin. Doxy is a tetracycline. Good luck and let us know what happens.

[Bobbie]

trob,
Hold out as long as you can before taking antibiotics -- but I know Lyme can be serious. Make the docs. "prove" you need them.

beth,
Would you post the list of antibiotics on the site? I'll copy it in FAQ.

I've always heard Doxy. is "safer" than Amoxicillin, but any antibiotic (even Flagyl - rarely) can cause C. diff.

Everyone on this site is terrified of taking antibiotics and having C. diff. again. I'm a prime candidate -- am on a PPI and a preventative dose of Macrobid for other problems.

Most people recover from C. diff. with one to two rounds of Vanco. or Flagyl but the minority, who are the frequent posters on this site, aren't as lucky. Some of us (including me) have one health issue after another after having C. diff. Are they related to C. diff., genetics, aging, or bad luck? Who knows? I do know having C. diff. didn't help.

[beth22]

Bobbie - Here is the list the doc gave me

Antimicrobials predisposing to CDI

Very commonly related: clindamycin, ampicillin, amoxicillin, cephalosporins, fluoroquinolones

Less commonly related: other penicillins, sulfonamides, trimethoprim, cotrimoxazole, macrolides

Uncommonly related: aminoglycosides, bacitracin, metronidazole, teicoplanin, rifampin, chloramphenicol, tetracyclines, carbapenems, daptomycin, tigecycline

It's from the New England Jornal of Medicine.

Beth

[trob25]

Thank you so much for that list! So Doxy is safer than Amox? Wow, I would have never guessed it because Doxy had been rough on me once, granted it was my 3 or 4th round of it, but wow.

I still have not heard from the lyme specialist, but if he says positive, I will ask him what he thinks I should be on, considering my c-diff, and see what he says.

[Bobbie]

Thanks, Beth. Posted in FAQ-Antibiotics.

Most the lists have Amoxicllin has a bigger offender than Doxy (tet.) My son developed C. diff. in l979 (when he was 4 yrs. old) from Amoxicillin. Back in those days, no one (including docs.) knew anything about C. diff. (We were fortunate that his ped. GI did.) He almost died. There were no support sites & everyone was appalled at this "strange new disease." He had C. dif. again about 6 years later. I've had it twice in the l990's -- little support or knowledge out there then either. Now we have a lot of knowledge but apparently few "cures."

Feel better, Beth.

[trob25]

Ok, so now I'm waiting longer, I didn't receive a call before noon today with my results, so I called right at 1 p.m. when the office returns from lunch and after 10 minutes on hold I find out my files are still at one office, while he is working at another one today! I had the girl fax the files to that office, with a note to call me with my number right on them.

One thing I have to thank C-Diff for (and those of you who guided me), is it gave me a lot more authority on my health care. When I don't get results, I demand new tests or specialists, when I don't like specialists, I change to different ones. When I don't agree with a diagnosis for antibiotics, I seek a second opinion. In the past I did whatever a doctor told me without question and never called more than once every few days as to "not bother them."

But you know what, I pay for this outrageously expensive private health insurance that only covers "some" of my stuff, so if that's what I have to deal with, they have to deal with my complaints/persistence.

[trob25]

Ok, I finally heard back from the doctor! Last night he still didn't call me back, so I called all of his offices at 8 a.m. 30 minutes before opening and left the same message, that I had been trying to get my test results read for three days with no success, that I needed the results today as I have antibiotics pending, so it is very critical, yada, yada. Well, do himself got back to me and while the results show some lyme antibodies, he does think I have lyme because it's similar to past test results I've had! He thinks "something" viral, flu, maybe mono flare up, who knows, caused a minor jump but that the jump isn't very alarming considering my symptoms I was initially having have gone away/improved.

However, he did ask if I'd noticed any ticks/bites/red marks and I haven't as I check myself almost every single day for ticks and treat my shoes with stuff that kills ticks on contact! He still said to watch for any weird symptoms, but barring that, my results look like anyone elses who have had lyme and been cured. Meaning, they show positive or near positive for years or forever.

So good news for now! Thanks for your support all and I'm glad I didn't just cave to those antibiotics initially!

[trob25]

Sorry, that's "he doesn't think" I think have lyme, I wish we had edit, that makes a big difference!