Nancy,
Your numbers look like those of many of us at onset of lupus. I have MCTD which is lupus, scleroderma and polymyositis and had an extreme, life threatening case. Polymyositis completely crippled me and I have come back from being a quadriplegic and unable to swallow 3 years ago.
The main thing is to get a diagnosis and then active treatment. You state that you've had symptoms for 3 years and did take plaquinel for a time. Did that alter your labs and did you feel better while taking it? You should get a second opinion and see if another doctor (preferably a rheumy who is experienced treating lupus and other AI diseases) agrees with your past treatment in view of your labs and many symptoms.
Your lung and kidney involvment concerns me. Are you being treated for either condition? If not, why not? I had kidney, liver, and GI tract (top to bottom) problems along with raynauds and some other conditions that developed as a result of PM.
I am surprised that you say it is dificult to get responses....most on the forum are more than willing to help.
My labs today are pretty much normal except for low platelets, protein (even though I eat a lot), and potassium. Overall, my labs indicate I am pretty healthy.
In case you are wondering, guys do get lupus just not many of us and particularly not old guys like me.
I would recommend going to a Lupus Support group if one exists in your area. Check out www.lupus.org and see if one is close. Most are worthwhile attending and you will meet people with your problems and worse who have navigated through it. Even though I am doing well I attend one monthly to help others and also help run a group for myositis (the muscle disease I have).
Keep on posting and asking questions. I do recommend getting another opinion or questioning your treatment. Lupus should not go untreated at your stage of the disease to prevent more serious problems later. It is so important to get your immune system under control as soon as possible.
Bill