Newly diagnosed/weird symptoms

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Mookie
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Newly diagnosed/weird symptoms

Postby Mookie » Thu Apr 26, 2018 9:58 pm

Hello! I am a 30 year old mother of two (hoping my little ones and husband don’t get this) I was diagnosed this past week after demanding a stool test (was on 4 rounds of Keflex for what my dr thought was flank pain from a kidney infection but just ended up being herniated discs in my lower back. He never ran a culture before I was put on the antibiotics). I’ve been experiencing some odd symptoms and I’m not sure if they’re related. My doctor has taken 4 vacations since all of this started so I’ve just been leaving messages on his nurse line. My questions are:

Has anyone experienced bone pain? Not just joint pain, but shooting pains randomly in their legs/hips/fingers and arms?

Has anyone else ran a consistently low grade fever everyday for weeks leading up to diagnosis/ after diagnosis?

Has anyone else felt like the bottom half of their rib cage was about to burst open from a pressure feeling?

My bloodwork showed high albumin and low BUN. Is this normal/related?

Lastly...did anyone ever end up infecting their families?

I’m so happy to have found this site. I’m very scared. Thank you for any answers you have.

AnxiousJ
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Re: Newly diagnosed/weird symptoms

Postby AnxiousJ » Thu Apr 26, 2018 10:29 pm

I am so sorry! I will let the moderators answer most of your questions but you MUST leave your doctor and find a new PCP pronto! What he did was completely unprofessional and absolutely reckless. Keflex is a VERY broad spectrum antibiotic. In addition to a new PCP, you should consider getting in to see either an infectious disease specialist or a GI who is well versed in this. A teaching hospital is a good place to find a doctor who specializes in this. I don't know what med you were prescribed but you may want to inquire about Dificid instead of Flagyl (aka Metronidozole) and a good probiotic like Florastor and/or Bio K Plus or VSL 3. Bio K can be purchased at Whole Foods or online (it is $$ but worth it) and Florastor and VSL3 can be purchased at most pharamacies. You should also consider ordering Clorox Germicidal Bleach Wipes or spray from Amazon or clean your bathroom with a mixture of 1 part bleach to 9 parts water. Try to use a seperate bathroom while you are ill, wash hands well and have your kids and husband do the same.

I am relatively young (ish) as well (45) with two kids and husband. They did not get sick when I had it in 2016. Good luck and I hope you feel better soon.

OCmama
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Re: Newly diagnosed/weird symptoms

Postby OCmama » Thu Apr 26, 2018 10:57 pm

I agree with J, find a good infectious disease doctor, use a separate bathroom if possible, use bleach/gloves, and wash hands.

I am now 33, came down with C. diff when I was 31, we had a family-wide infection. It is rare to pass within the family. Just make sure so one takes any antibiotics (unless life saving/truly out weighs the risk of C. diff infection).

I had very severe right flank pain, and pain at the bottom of the ribs. We all had strange levels show up on our labs, 2.1 potassium, high neutrophils, husband had scary low sodium. C. diff sucks. Big Time.

Do you have any teaching hospitals by you?

roy
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Re: Newly diagnosed/weird symptoms

Postby roy » Fri Apr 27, 2018 4:51 am

Low grade fever is a typical sign of c.diff but also of most other illnesses.
C.diff is a naturally occouring bacteria, it becomes a disease if it overgrows and your body reacts to the toxins it produces.
Even if you had a bucket full of c.diff inside you it's not a disease unless your body reacts and it causes D!
The body's reaction is the disease, not just having the bacteria.
It's possible to transfer the bacteria to your family but it's very unlikely they would become ill because their immune system just deals with it or their gut does not react to it (it probably does that many times a year without us even knowing).
They would test positive but not need treating.
As an example I recently read that 1 in 4 farmers that work with pigs have c.diff in their gut as part of their normal flora.
The problem with testing for c.diff is that a LOT of Drs only look at the test result and because c.diff is listed they think it must be treated, that's totaly against the guidlines and can even cause it to become a full blown disease.
You don't mention if you had classic c.diff symptoms but just be aware that testing your family is not needed unless any of them develop profuse watery D, and that's very unlikely.

Mookie
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Re: Newly diagnosed/weird symptoms

Postby Mookie » Mon Apr 30, 2018 12:33 am

Thanks for the response! I’m getting in with a GI dr soon hopefully. The local hospital (which is a student hospital as well) put me on 10 days of 125mg Vanco. I hope it works. I declined the Flagyl because I read so many stories of it not working. My symptoms were loose stool that started after taking the Keflex and continued for a couple of weeks. Then last weekend I had b in the stool. Went to the hospital, they did labs and sent me home. Later that evening my temperature went to 103 and I went back and demanded a stool test. They said it was unlikely I had Cdiff because Keflex doesn’t cause it (even though there are warnings for Cdiff all over the insert in the prescription) 2 hours later it came back positive. I immediately purchased the Clorox hospital grade wipes from a local janitorial supply (they’re expensive!) and unfortunately I have to share the bathroom with my family since we have one toilet, but I clean like crazy. Haven’t had and D since day 4 of the Vanco. Just kind of crampy and stools are a little lose. Still having fevers and intense bone pain. Idk what that’s about. Hoping it’s not something else brewing in my body somewhere. I have taken PB8 probiotics for years, do any of you recommend switching to a different one? Thanks for being here for me guys <3

beth22
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Re: Newly diagnosed/weird symptoms

Postby beth22 » Mon Apr 30, 2018 1:34 am

If you tolerate the probiotics that you take well, then I would continue with them. Just make sure to space them apart from the vanco because it will kill a lot of it. Many people take Florastor, which is a yeast, and is not killed off by the vanco. Some people, like me, have problems with it. I got terrible gas and bloating and even a rash. But, others say it has helped them. If you do decide to try it, start with a small dose.

Lisa33
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Re: Newly diagnosed/weird symptoms

Postby Lisa33 » Mon Apr 30, 2018 10:18 am

Just wanted to add my two cents to try to reassure you that the likelihood of passing it on to your family is very slim. You are doing everything right and practicing good hygiene, so try not to worry about that. I had it when my daughter was 3 years old, and she did not get it. She even took an antibiotic around the same time of my c-diff, and did not get it. It's hard being a mom of young kids when you aren't feeling well and battling this awful illness. All I can say is do the best you can, take care of yourself, don't feel guilty and get better. It will just be a blip in their lives when it's all over. I know it's hard though. Hopefully the vanco does the trick. There are a lot of unexplainable symptoms that come along with c-diff, so getting in with a good GI can help to navigate through it. So hopefully they get you in soon!

Feel better,
Lisa

Mookie
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Re: Newly diagnosed/weird symptoms

Postby Mookie » Mon Apr 30, 2018 10:03 pm

Thank you guys for the reassurance. Results for my hospital urine culture came in and it was positive for kidney infection on top of me already having Cdiff. I don’t know what to do. My kidney pain is through the roof. I’m taking Vanco and I’m afraid they’ll put me on another antibiotic. My stomach is also super hard. Is that normal? Thank you all again.

Bobbie
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Re: Newly diagnosed/weird symptoms

Postby Bobbie » Tue May 01, 2018 1:12 am

If the infection is caused by E. coli, macbrobid should work, itnis considered a "safe" antibiotic.

See CDI - UTIs for more info on UTI's. Drink lots of water.

Let us know how u are doing

Best to u.

Lisa33
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Re: Newly diagnosed/weird symptoms

Postby Lisa33 » Tue May 01, 2018 9:56 am

Ugh, so sorry to hear that you have a kidney infection. As Bobbie said, maybe you can take Macrobid along with the vanco? You need a GI or ID doctor to know what the best line of treatment is for you for both the kidney infection and the c-diff. There are lower offender antibiotics (can be found under CDI Info - All you need to know) that may not destroy as much gut bacteria and will target the bacteria that you tested positive for. When it rains, it pours. Hang in there!

Mookie
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Re: Newly diagnosed/weird symptoms

Postby Mookie » Tue May 01, 2018 7:36 pm

Thank you! Still waiting for an appointment. The ER doctor refilled my prescription for another 10 days of Vanco. He said he wants to be on the safe side even though I don’t have D anymore. The kidney infection bacteria isn’t Ecoli. It’s called Klebsiella Pneumoniae. It’s apparently an opportunistic infection and labeled a superbug. Idk what to do. My kidney hurts worse than the Cdiff.

Lisa33
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Re: Newly diagnosed/weird symptoms

Postby Lisa33 » Wed May 02, 2018 11:18 am

I just looked up the bacteria that you tested positive for on the CDC web site. As you said, it is an opportunistic infection. It says that it can be contracted in health care facilities or from long term antibiotic use among other ways. Since you are now dealing with two stubborn infections, I would really suggest if you haven't done so already getting a good infectious disease doctor on your team here. Somebody needs to treat you correctly for both infections. The kidney infection needs to be cured. Is there any doctor that can help to get you in with somebody quickly - your PCP maybe? I just feel like you need to be on the proper treatment regimen for these two infections, and shouldn't have to be in so much pain while waiting to get an appt. I'm so sorry that you are going through this. I know it doesn't feel like rainbows right now, but one day this will be in the past.

Mookie
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Re: Newly diagnosed/weird symptoms

Postby Mookie » Wed May 02, 2018 8:31 pm

Thank you so much Lisa. I cannot wait to be better. My PCP is the one who got me into this mess with prescribing too many antibiotics. I’m on a waiting list for a new PCP. I will try and find an infectious disease doctor ASAP. I hope I don’t need a referral. I just need help!!! So much pain all because my dr never sent a culture to begin with. Ughhhh. My GI dr appointment is next Wednesday. I start my second round of Vanco tonight. My poor gut. I wish I could afford florastor. I’ve read good things. Hopefully my PB8 probiotics help. Fingers crossed.

Auntlou
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Re: Newly diagnosed/weird symptoms

Postby Auntlou » Mon May 07, 2018 10:23 am

This is a wonderful site. I have been on two rounds of flagyl and this still will not go away. I see that flagyl is no longer recommended and instead I see vanco and difcid? I have a call into my doctor because now I have back pain and light green urine. Double infection? Thinking of going to a GI now. What scares me is the reoccurrence issues.

Lisa33
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Re: Newly diagnosed/weird symptoms

Postby Lisa33 » Mon May 07, 2018 12:10 pm

Hello Auntlou - welcome to the site. Please read the first forum for all new users on rules of posting, standard intro, etc. So sorry you are dealing with c-diff and was put on a second round of Flagyl! I would definitely see a GI. But, you may want to voice your concerns to your current doctor who you are dealing with to make sure that a UTI is not starting. I would drink a ton of water to try to flush anything out. Being afraid of relapsing is what causes every c-diff sufferer anxiety. Unfortunately, you have to just wait and see. As the more time passes by, the risk of relapse goes down. You have to try to replenish your good gut bacteria and avoid antibiotics. Hopefully, your c-diff was cured, but if you do shows sign of relapse, I would definitely look into vanco or dificid, and even discuss tapers.

Wishing you well and hopefully no UTI.
Lisa


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