tested positive again:( how common false positives

[hope4me]

My journey: I was a healthy 37 year old femaile until 2 years ago. I ate something and got severe ecoli infection. it settle in kidney and bladder and after 2 years of antibiotics, I beat it. My celebration was short lived because I contracted c diff at the hospital after getting mri.

felt sick, high fever and severe diarrhea up to 20 times day. lost some blood, tissue, and had significant dehydration, lost weight.
tested positive for c diff and started treatment.

-prescribed flagyl, bad side effects(altered serotonin level, had mood swings, caused severe anxiety, brought on menstrual cycle 2 weeks early and then cycle didn't return for 50 days. didn't work at all for c diff

- prescribed 2 weeks vanco, side effects were less but still hard to cope with. when I done, I felt worse than when I started
hit rock bottom. felt severely depressed and even suicidal.

-fever remained at 99.2 for 4 months

-prescribed 8 week vanco taper. side effects were stronger during the first two weeks. anxiety, cramping, bloating, swelling, rapid weight gain. I looked as though was taking a steroid and got bloated very quickly in my face and fingers. also my bladder was sore and I was not peeing as often and retaining water on vanco. completely iron depleted and cause severe fatigue.

during most of vanco taper, had normal stool. after the last dose actually had 14 ok days. I started feeling hopeful. I was more active and did more physical tasks like walking more and light exercise. My biggest concern was still felt extreme fatigue and sometimes had low grade fever. I retested and says I still have it:( not sure yet if false positive. I was told common to get false positive for up to 60 days especially for those who are non symptomatic. but since I have low grade fever not sure.

Now I am scheduled to to get fecal transplant in 8 weeks. yesterday I was prescribed another 6 week dose of vanco taper but have not started yet. I was told to wait and see if fever gets high and moniter symptoms. I read it is common to get false positives which is concerning because on one hand you don't want to let spores get out of control and grow, but also you want to give your own body a chance to regain good bacteria and restore normal red and white blood cell count after vanco destroyed them.

To help manage this disease, I take multi vitamin with iron, b complex. I also take florastar 2 x day, omega three supplement. Some days I feel like I am getting some strength back but hard to tell. I have to push myself hard just to have the endurance to get through regular tasks.

I have used my own bathroom for 6 months and separate my laundry. so far no one one else in house hold has gotten sick. I don't have diarrhea but I still I bleach my bedding once per week. I bleach bathroom every other day and bleach phones, keyboards, light switches, remotes, and kitchen sink, floors, counters.

despite testing positive, my stools are normal with help of some foods: white rice, banana, water, lemon water, apples. shrimp, lots of garlic, sliced blanched sliced almonds asparagus, kefir, plain chicken.

I can not eat ANY chocolate, cake or frozen yogurt whatsoever or it makes me sick immediately. If I eat something that doesn't agree , I notice my fever goes higher immediately and takes 2 days to recover from diarrhea

any time I had bout of sickness and felt dehydrated, I would drink a bottle of Pedialyte and it helped me immensely.

My battle continues. some days I think I can beat this and others I feel so sad and alone. My husband and kids have been so wonderful and supportive but not being able to give them 100% is depressing. they said they miss the old me and makes me sad. I don't want to tell friends and neighbors exact details because it is embarrassing. This website and been a great source of comfort because some days I felt so hopeless and alone. wishing a cure for every single one of us on here! thanks for reading.

ps If you need a pick me up, I love 3 movies about hope and resilience: Shawshank Redemption, Rudy, Life of Pi :)

[beth22]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.

Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.

No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

So sorry about your ordeal. I am glad that you are feeling better, and to answer your question, yes, you can test positive for a while after treatment. It is not really a false positive. You are positive, but without symptoms doctors usually don't treat. I know a fever can linger after many infections and I don't know how significant it is for c difficile. Your doctor will have to make that judgement. If you are having FMT done, then the protocol is to be on an antibiotic prior to the procedure. Usually vanco is given, but you will be on it for a long time before it seems. Normally it is about two weeks. With all the antibiotics that you took, both for the e coli and for c diff, I think the FMT is a good idea in order to replenish some of your good flora that was destroyed. Probiotics can't do that alone. It takes a long time and some bacteria, I have read, doesn't come back. I wish the same could be said for c difficile. I would discuss all of this with your doctor. But, as far as the positive test goes, yes, it can happen and it has happened to other posters. As long as you don't have symptoms of a full-blown infection, I would not worry too much about that.

[Jackie25]

I'm sorry your not feeling well :/ the only thing that really stuck out to me throughout your whole story, is that you say you have formed/normal stool. I know you are experiencing some others symptoms such as the low grade fever every once in awhile and the issue of being rundown and tired, and also low endurance. From what I've experienced and also what I've read here on the site these can be issues during recovery for some people. As can testing positive for quite awhil without having having an active infection. It is quite confusing if one is having formed stool but still seeing a positive test result. Today is 11 days post vanco for me and I woke up to M loose stool and automatically felt I was relapsing of course. It's a difficult situation to be in I know.

I think waiting to start the vanco to see how your symptoms go is a good idea. I know it's confusing trying to decide whether or not to treat and the possibility of the infection getting out of hand. On the pluse side, if you start to see worsening symptoms you have the vanco on hand and an upcoming FMT if things go south. And maybe they won't :) normal bms could be a good sign, I'm not a doctor but no D is something right?

Try and stay positive and know that one treatment or another will cure you! I hope you start to feel better soon!

[Tonja13]

Wow, you have really been through it! After so much, don't expect to just "bounce back" like after having a cold or something. Unfortunately, recovery is slow...months and months...so be patient. Also, your gut doesn't even begin to start healing until after you STOP the antibiotics (vanco, etc.). Your gut flora has to recover and it's not a "pretty" process all the time. Lots of highs and lows. And yes, a LOT of foods will throw you off for a couple days. We've all been through it. Try not to panic...the fact that you have formed stools is very promising. After going through so much--I would continue with the FMT you have scheduled...could really help with the 'gut flora' recovery.
As far as the 'false positives'...it is common to continue to test positive for some weeks after completion of treatment. This is because the tests are PCR tests. (DNA tests.) They also detect dead bacteria and spores. You will continue to shed one or the other, or possibly both, for several weeks or maybe even longer. That is why is it wise to monitor your symptoms as well...over-treating will just delay your recovery longer.
The fever going on that long would concern me as well...If it were me, I might want to have more tests/blood work done to look for other possible causes for that, not discounting the CDI.
Good luck and I hope you are feeling better soon.

[Lisa33]

You have been through so much and I can't even imagine how frustrated you must feel after battling illnesses for so long. I agree with everything that the others said. You don't have the D which is a terrific sign that things are going in the right direction. From what you wrote, it sounds like you are doing everything right to beat this thing. I felt extreme fatigue, achiness, and just an overall feeling of a constant flu after c-diff. It took several months to feel better. Given everything that your body has been through, including two very intense infections, e-coli followed by c-diff, it can take quite some time to recover from. I'm sure your immune system has also taken a beating from all of the meds as well. After I finished my last vanco pill in November 2014, I had that flu-like feeling and extreme fatigue. I went to a functional MD in January 2015 who did a complete blood work up, as well as, checked for vitamin deficiencies. If you haven't done this yet, it may be wise, as infections such as c-diff can leave you with deficiencies that can be adding to your symptoms. I was only deficient in Vitamin D, but the dr recommended that I eat gluten free for 6 weeks to see if I saw improvement with the fatigue and digestive issues that I had. After about 3 weeks, I started to feel improvement. My energy level improved significantly and I just felt better overall. I continued on the gluten free diet, and am still doing it about 80%. This worked for me, but recovery is a very individual thing.

It is weird that you are still running a low grade fever, but maybe that is just from the beating that your immune system has taken. The doctor should be able to answer that. But, I think your plan of waiting to see how things go before starting the vanco, makes sense as you may have beaten the c-diff this time. And having the FMT lined up is definitely a great next step, as it does have the highest cure rate. It sounds like you are doing everything right. I know how depressing this all has been for you. Chronic illness can really wear you down. You have to look at your kids for the motivation and will to fight through it. They need their Mom. As a mother myself, I can understand the guilt of being sick and not being able to be the mother that you want to be for your kids right now. But, you have to cut yourself some slack and deal with getting better. You will get back to life in full force for sure. It just may take a little time, but you will put this all in the past. And with every passing day in recovery, there will be improvement, even if you can't tell right away. In a month, you will look back and say, I am definitely in a better place than I was a month ago. And it will just keep getting better and better.

Hugs to you and stay strong,
Lisa

[roy]

3 week old thread Lisa!
Tonja13 resurected it and I dont think 99.2 is a fever, its a range of normal.
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