Am I crazy for being concerned ??

@ffelkey
Hello,

No you are not crazy and there are a ton of articles and abstracts online about synovial fluid induced S. Aureus. I don’t know what “rare” means but I am surprised that no one tried an antibiotic. Staph infections are hard to treat because so many are resistant to antibiotics. My opinion is that you are being treated very casually by your doctors. I am not sure what type of specialist you should be seeing at this point but don’t let this go. You are not feeling “normal” so something is not right. See a new doctor if you have to and have your complete medical history ready and let them know what hasn’t been done and ask why no antibiotics were considered.

Time to get pushy. Please let us know what happens and hopefully someone with experience in this area will helpfully post.

FL Mary

@ffelkey I agree with imallears (I love that handle!). Something seems wrong and that infection sounds alarming. It isn’t right but unfortunately the patient needs to practically order the right test and come up with a diagnosis for themselves these days and then find a doctor that will even listen to them. Please don’t give up. If it is possible, have a male go with you to appointments. I read studies have shown females get better treatment if a male goes with them. It makes a difference when I do. I am so sorry you are going through this at such a young age.

Thank you for the reply ! I think the reason it says "rare" is because it says "rare staphylococcus aureus negative coagulase" which from what I've seen is a type of that bacteria that typically lives on one's skin and is harmless but if somehow gotten into the body, can be dangerous and cause infection since it doesn't belong there. Now I'm not really sure my family doctor understood those results. She told me that bacteria is not dangerous. She also acted as if it saying "negative" means everything's fine ? She said "well the test came up negative for staphylococcus aureus". When actually it's just a different kind of staphylococcus aureus. On the test it literally even has a chart of what antibiotics would work best and what would be more resistant.

I do have some hope because I have an annual check up with my hematologist on Nov. 14 and she is one of the only doctors I have that I feel like actually listens. My mom goes to her and tested her B12 for her since my family doctor told her "it wasn't necessary". Turned out she was extremely low in vitamin B12 yet my family doctor didn't think it was necessary to check even though we have a family history of low B12. If you ask my hematologist to do a test though, she says "well it never hurts to check". Hope she will give me her opinion on all this and possibly order some tests that my other doctors won't.

Thanks again for the reply and I will update if I find anything out. x

@ffelkey - you definitely are NOT crazy! That’s a label doctors use (“it’s all in your head - you need to see a psychiatrist!” is what I got for several years) when they cannot figure out what’s wrong with you! It takes just one interested doctor to zero in on your problem, so don’t stop looking for a diagnosis!

It took many years before a new physician suspected (but didn’t say it at the time) what was wrong with me, and referred me immediately to a rheumatologist who examined me and within minutes told me I had fibromyalgia. She sent me for some tests that day which confirmed it. My physician then told me that is exactly what she had suspected, but not being a specialist, she wanted it confirmed by one.

You may have an auto immune illness - and that is difficult to diagnose because it can mimic several other illnesses.

@ffelkey - not all rheumatologists are familiar with fibromyalgia and other auto immune illnesses, so get second opinions from each each doctor specializing in different conditions till you find the right one.

Hi, I read about your concerns, and I agree it is a bad feeling not to know exactly what is going on. There is another, less alarming possibility, for the finding of staff in the synovial fluid in your knee is contamination in the doctor's office. By that I mean, it was contaminated by the bacteria on your skin as or after it was drawn.

When your doctor says the test came up negative, she means for any S. aureus - it will all show up on the test, then it is further cultured to determine the exact strain. This means you don't have active staph now.

You are reporting your blood test results - keep in mind that with an autoimmune or inflammatory condition of any sort, the counts ebb and flow - go up and down based on what is going on in your body. The fact that you needed your knee drained & a steroid injection tells me (a non-medical person, but with a long medical history) that you had some extraordinary inflammatory process going on already. It is not uncommon to have inflammation show up as a variety of unpleasant symptoms, especially increased body aches, fever, etc.

In reading all of your posts, I can see that this incident has given you a great deal of anxiety. And you diagnosis of lupus and RA is no picnic either. It stinks that this is happening to you at a young age, so you need to start thinking about how you will manage for the long term.

The key with chronic conditions like yours is to realize you are going to have periods of feeling bad as disease progresses, and adjustments to medication, diet and lifestyle will always need to be made. Perhaps you can arrange to talk with someone about how all of this is affecting you mentally and emotionally as well as physically. Maybe you can get some help developing coping skills for dealing with flares and setbacks?

Sue

@ffelkey You sound like so many of us who don’t feel that we get the whole answer. Doctors say the same thing over and over and forget that the person they’re speaking to has never heard of it before. Medical terms are like a foreign language. You may want to consider going to a major medical center of university teaching hospital in your state. The doctors are usually more knowledgeable. That’s what I had to do when none of the doctors in my town could recognize/diagnose what was on my MRI. The university hospital has been top-notch for me ever since.
Is that something you might consider?

I read your full post and I am with you 100% that sounds like a systemic infection that got ignored. I feel like I cannot get one doctor to listen to anything I say. I have 8 different autoimmune diseases and get no help. I cannot have the preferred treatment for most because of one of the other autoimmune conditions so they leave me with nothing. I go through the same things and I cannot function with all the symptoms. Staph aureus could be MRSA and that can colonize in your body. It’s a nosocomial infection. Upon admission to loyola hospital all patients are required to have a nasal swab for MRSA otherwise I would have never known I was colonized. It manifested as sores on my body after that. I’m immunodeficient so my body can’t fight most infections. Found that by accident as well. Ugh please keep posting and I hope you find someone to help you🙏

Honestly, the more you share about your doctors, the less it sounds like they take you seriously (or even know what they are talking about). Please don't ever ignore your gut feeling. You've also done enough research to know this isn't normal, and a doctor who spends 10 minutes with you will never be informed enough to actually think through your case. As others have said, we have to do our own research these days and PUSH to find a doctor who will actually listen. I wish you all the best!

I find it absolutely interesting how the most reliable comments are from people that are non biased those real patients that had not forgotten their challenges, meaning not from the volunteers or people that personally I feel their are biased by the system. I’m not saying they don’t have information that can be considered but no amounts of CBT will cure an infection, if the patient needed antibiotics why wasn’t this given to the patient? I hope the perpetuation of this wrongful, negligence and diagnosis overshadowing STOPS and we are all part of the change… just saying. Btw since I’m constantly being censored by the person running this deleting my posted discussions (have evidence, maybe you won’t even see this), I hope you get the health care you need as soon as possible and to have a appropriate care team that cares for the patient that cares of you.