Frustrated ,confused and terrified!: I have been... - NRAS


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Frustrated ,confused and terrified!

Damaged profile image

I have been struggling with multiple infections and yet tests are not reflecting how bad I feel. The UTI , urine test came back as multiple enteric flora ? Considered contaminated yet no follow up. Does an E. coli bacteria just go away? Access certainly has not but lung infection does seem better. My CRP is 1.0 WHAT ? I had to clean up a leak in kitchen and could not pick myself up off the floor. I cannot walk a block. My feet and ankles, knees and hips are killing me. Why are bloods normal?

If it is this bad without inflammation then OMG what is yet to come?

7 Replies

This is no help to you but I swear that some people have many symptoms of infections and inflammation yet the serum markers that are usually tested (e.g., CRP, ESR) remain well and truly within bounds.

You've had such a lot to deal with, coping with these infections and your joints/limbs. I'm hoping for a resolution for you.

Damaged profile image
Damaged in reply to ITYFIALMCTT

I did get a good urine test from Rheumy which was far more detailed. It included information about blood Ext. It showed a severe E. coli based UTI. The cats can done by Endodontic Specialist also shows severe abscess. It is all through the front of my jaw and yet No inflammation. It literally blows their minds. They cannot believe that it does not show at all except X-ray. Then it is the eye tooth which is abcessed and the infection is spreading. My issue is that I do not want to subject myself to surgery as I have UTI which can become a blood infection (Sepcis).

Sorry just rambling.

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Damaged

Dental abscesses can be foul. I've had several and one of them, unbeknownst to me, while I was on a waiting list for the surgery to have it treated, actually eroded the bone of my upper jaw enough to fracture it (for various reasons).

Your results seem like a clear example of someone whose clinical symptoms of inflammation need to take priority over blood work indications of it as you're plainly not in the normal bell curve distribution for this.

So sorry you are going through this. My CRP is almost always <5 , no matter how bad I feel. I have read that this is the case for a large percentage of RA patients. The medical staff should know this.

Damaged profile image
Damaged in reply to ann_martin37

I never have received any information from health care workers.i vaguely remember a pamphlet in the early days on Biologics. Fortunately, many years of school enabled me to do my own research. The fact that I am now home and unable to work provides a lot of free time. For me it is driving me crazy. Such a radical change in lifestyle . If it were not for the agonizing pain lol my husband would love to trade places.

In fact, it has just crossed my mind. I have truly had poor health care. My GP missed diagnoses for what is at least ten years. For fifteen years he has been feeding me opiates and does refer me to specialists for Gastrointerologist, ethics Ext for years I have been getting cortisone injections in hand, thumbs, fingers, shoulders and those doctors diagnosed Tenosynovitis six years ago. Then when I could no longer walk I had to insist on testing. Sometimes you need to confront your doctors or nothing changes. He was quite content with writing yet another prescription. Now that I actively manage my own health care I am aware of the endless mistakes. Particularly with medications. I refuse to just blindly take whatever they prescribe. Now I look before leaping. Many drugs should not be taken at the same time. Many contain allergens or have side effects you may not expect or associate with drugs, like back pain ! Still blows me away that a drug can create back pain, wow.

I also learn about every test, what t is for and how to interprate results. But there is so much to learn. This does not replace medical advise but it makes me question it regularly. In the end I figure it is my body, I suffer the consequences so I make all decisions. All my doctors get the speech from the start. They are generally ok with that. I am much more diplomatic in my approach. I do confront them or (him)GP on occasion.

In his defence , they work in a system and are not autonomous. They are given certain guidelines and must operate within those parameters. Most Rheumatologist have at least 200 or more patients. I am not sure how many a GP has but considerably more. They have ten minutes to listen to symptoms, examine and diagnose a patient. That is ridiculous when you think about it. They also need to know enough about all conditions to diagnose. It is an impossible task. That is of course an over simplification but my point is simply we expect far to much. So I have forgiven him for that but what I do not forgive is his continued neglect.

I continue to have multiple infections and no treatment. I had to go see him to get first test which he said was fine. My Rheumy called regarding other issues and I had her retest. This test was not just for infection but for signs of blood in urine Ext. I went on Ciproflaxin, a very strong drug but am certain the infection continues. The burning has stopped but there is foam and bubbles in urine. This online, indicates a loss of proteins. My regular blood work turned up nothing including low CRP. I do not understand yet no one is explaining. I see Rheumy July5th and until then will do nothing. Unless all infections spontaneously disappear I will address it then. I have pushed back the Rituxan due in June.

Oh and I will not submit to oral surgery until those concerns have been addressed. They should know from experience with Prednisone. I went sixteen weeks with CRP at forty+ but refused to take Diclofinac. So it did go down on its own but a painful time to endure.

I will not do as Endodontic doctor wants. No surgery until I am assured the UTI is gone.

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