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Knee Infection Revision Due to Infection

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Had my appointment with my infectious diease specialist and he also thinks that it is still infected. 9 months of antibiotic treatments, 22 days in the hospital, 4 surgeries and I'm still infected. ARGH! He of course needs a culture to be sure but I'm still very hot to touch. They were seeing something in the bloodwork (I don't remember what) strange bulges of swollen areas (not fluid) and more painful than 4 months out should be. He took me off my IV and switched it to oral antibiotics. My PICC line was getting old. He said we can put in a new one if the orals aren't working.

The thing that worried me was 4 times he said that at sometime we might have to just "stop treatment." I went kinda numb at this point. I wanted to ask what we do then. But. I just didn't want to hear it. Now I'm sorry I didn't ask. What - amputation? So now by not asking I'm freaking out. This just needs to go away. I'm praying that my infection is cured by the oral antibiotics. Please talk me down from the ledge......
 
Gknee,
Until they know what is going on in your knee, and can give you the right antibiotic they won't be able to answer your questions.
I am going to tag @Josephine for you.
Take a deep breath, and let the antibiotics do their job.
 
Is it time to try a different infectious disease Doctor? I asked my dr why they couldn't just put a shot of antibiotics directly in my knee. Of course they couldn't, but I was trying to understand the whole situation.
 
Hi,
Wow....please keep posting. I'm kid of in the same boat. I went to my doctor today. My knee is starting to have pain, a big growing red spot , and I had a slight fever. I go back next week.
It is hard to believe that an infection can still be there with all the antibiotics they have pumped into me.
Stop treatment? I have only had my new knee in 14 days. Iguess that means amputate. We will see.
Heads up. You're not alone.
Steve
 
I am sorry things are so difficult for you Gknee. You have been struggling so long with this. I see my infectious disease dr tomorrow. I did the 6 weeks of IV and just finished the 6weeks of oral. I have the prayers going for both of us:)
@KarriB. I didn't get a shot but they did put dissolving antibiotic beads in mine when they did that last clean out. I wish it was that easy;)


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Am I the only one of us that's been on long term antibiotics? I've been on antibiotics for over 2 years. There was 6 weeks of IV and oral at the same time, then I had to go off everything for a week or so because of my declining white count, but as soon as it came up my doc put me on doxycycline and I've been on it since then. It's been 26 months. At the time I was upset about taking antibiotics forever, but weighed against the knee coming out and the possible reoccurring infection I changed my mind.
@PegGar16 i don't know if they used the beads during my washout or not. I'm sorry you are both experiencing symptoms again. It's just overwhelming.
 
@KarriB

I am on a low dose Bactrim pill that will possibly be life long. I would rather do that then have to worry about infection.:)
 
Sonja, I am of the same belief and my ID doc agrees. Without it I would be worried. What I loved about my ID was that she was young, but told me when she referred to her mentor at a bigger city hospital about my infection and the best way to treat it.
 
Gknee said:
The thing that worried me was 4 times he said that at sometime we might have to just "stop treatment." I went kinda numb at this point. I wanted to ask what we do then. But. I just didn't want to hear it. Now I'm sorry I didn't ask. What - amputation? So now by not asking I'm flipping out. This just needs to go away. I'm praying that my infection is cured by the oral antibiotics. Please talk me down from the ledge......
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@Gknee this kind of infection isn't quite like an ordinary infection. It's generally much more low grade and doesn't tend to lead to septicaemia like other, more rampant infections. But I really don't think an infectious disease doctor is the right kind of specialist to be dealing with your case as per-prosthetic infections aren't like ordinary infections. There are joint replacement surgeons who do specialise in peri-prosthetic infections and one such is broken link removed: https://www.dfwsarcoma.com/ in Plano TX. He is the 'go-to' person for these kinds of issues. He will look at your records and xrays and give you his opinion by phone or email if you can't travel to see him. I do strongly recommend you contact him and ask his opinion.
 
PegGar16

Jo is right! You are battling an infection that is unlike others. I went through the same thing, but when I was referred to Fr. Maale, I learned about bio films like you apparently have. Look up bio films and it might help you understand better.
 
Yes, that is the kind of infection that I have. One stubborn bio film, drug resistant, son of a gun! My last cultures came out clear. But when you look at my knee you can tell that something is still brewing. My knee even after 4 months since my stage 2 revision is painful, has odd swollen areas, oozing, red and blotchy, and hot. My Dr. said that some infections can come out with a false negative yet still be active. I am so sick of this infection. Just a few days ago I developed another allergy to my new oral antibiotic. I hate hives! I'm now on a newer oral antibiotic. I pray that this one is the magic pill.

@Josephine what do they do when they can't get rid of the infection? Do they try another revision with a new antibiotic spacer and start over? What would happen if they just stopped the drugs and let the infection stay there?

I am very happy with my surgeon she is one of the very best in Southern California. Anyone I have spoken to Dr or Nurse all agree she is fantastic and the best. I'm not sure how seeing a Dr. in Texas would go over with my insurance. HMO's are so stingy. I will bring it up with my surgeon at my next appointment.
 
My knee still seeped after weeks on oral and IV antibiotics. I felt as if the infection was fleeing from my leg. Do they know what type of infection is?
 
Gknee,
I think they mean you would do a phone consultation with Dr Maale. He may be able to help you sort out your continuing infection and offer some suggestions.
 
We are talking about a phone consultation between your OS and Maale. Dr. Maale has perfected the one stage replacement, and he does a special protocol to get rid of the biofilm. I traveled 6 hours quite a few times one way to see him. Your surgeon might want to discuss your case w him.:console2:
 
Gknee said:
My Dr. said that some infections can come out with a false negative yet still be active. what do they do when they can't get rid of the infection?
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They can't stop. They have to go on until the infection is either eradicated or brought under control.
Gknee said:
I'm not sure how seeing a Dr. in Texas would go over with my insurance.
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Like Sonja said, this is just a telephone conversation at first. But Dr Maale is one of a kind, a pioneer in the subject. He has also perfected a means of identifying the bugs by DNA testing! He says he has found bugs as yet unknown to medicine. Did you read the article I left you?
 
Funny part was when the insurance called asking about the DNA testing! He sent the test to Germany to be read. Then he knew what he was dealing with and I am close to my 4th anniversary on this knee! :loveshwr::happydance:
 
Josephine said:
Did you read the article I left you?
Click to expand...
Yes, I did I learned a lot. Thank you for the information. I have an appointment with my surgeon and ID doctor in the next few weeks. I'll see what the next step is. I'm just so ready for this to be over.
 
:console2:Actually, you might be better off having your OS talk to Dr. Maale. The doctors get quicker responses. My doctor was happy to send me to Maale; maybe yours can speak with him.
 
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