Hippiemom I have a couple of questions

Definitely stay on top of things. Protein and blood in your urine without an infection almost always means that your kidneys aren't doing their job. It's also interesting that you have the elevated liver enzymes. I had elevated liver enzymes when I was first diagnosed with CFS and then again later after lupus was suspected. about 2 and a half years ago I got really sick (after a long remission from CFS) and I could tell it was more than CFS. SOme of my bloodwork I had done indicated lupus so I was referred to a rheumatologist and she has been treating me for lupus. My own theory and personal opinion is that people with CFS and FM really need to monitor their symptoms closely and get labs done whenever there is a change in symptoms or symptoms get much worse because they could be developing an autoimmune disease such as lupus. I've never heard of people dying from CFS or FM, my guess is that these people developed complicating factors on top of the CFS or FM. For about the past 2 years I've had protein on and off in my urine and then about 6 months ago I always had significant protein in my urine, so a 24hr urine test was done and it was elevated but not high enough to indicate kidney damage - my kidneys aren't working correctly but at least there is no damage yet. The good news is there are a lot of meds to protect kidneys now. Have you a rheumatologist? I would highly recommend that you get all your labs together from every place you have been that you have had abnormal bloodwork (I know it's a pain, but it's the only way a doc is going to put the peices of the puzzle together). The thing about CFS and FM is abnormalities should not show up in your bloodwork (aside fron the ebv for CFS). If there are abnormalities, you are probably dealing with another illness on top of CFS/FM. A lot of people with lupus, RA, etc also have FM. Please stay on top of this and insist that docs figure this out. Kidneys are nothing to mess around with. I just saw a kidney doc and he said if blood shows up in my urine along with the protein, he would have to do a kidney biopsy. ANother option you have is to see a nehrologist (a kidney specialist) to help you figure out why you have protein and blood in your urine. ANother oprion is to request a 24 hour urine test the next time protein shows up in your urine - if it is fairly high, you will probably get sent to a nephrologist. If you have any other questions, please ask. I know how frustrating and scary all of this can be. Take care Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/

Speaking of the ANA test, there are some members on the lupus forum that it has taken a long time for the docs to catch a positive ANA. The ANA can fluctuate from positive to negative and sometimes a positive can be hard to catch. I'm not familiar with some of the values they tested in your 24 hr urine test, but I don't see total protein on there. I really hope you find a really good doctor who will try to piece this all together for you before things get too bad with your health. It's too bad you have to wait so long to see a rheumy - hopefully you'll get a good one. Hang in there. Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/