Why is diagnosis so hard!

Hi,

According to my internist, infectious diseases doc (lymes, nothing active now they say but I did have a positive IGM antibody b. burgdorferi, but negative IGG western blot), and rheumatologist, I am a "conundrum." I have not been feeling well for a couple of months now. Extremely fatigued, short term memory loss, every bone in my body hurts it seems, headaches, face rashes but only my nose and chin, not forehead, my parotid/salivary glands swell up huge like mumps (never both, it's one then the other) and I go straight to 103 degree fevers. I've been coughing it seems for a month straight "but your lungs look good!" on xray (I'm coughing up blood!) I was in ER two weekends ago with "severe vomiting/nonspecific" and "abdominal pain/nonspecific" as CT of abdomen was "normal." They concluded stomach flu, gave me Zofran and sent me home.

So far, my tests are Positive ANA, high Sed Rate (57), CRP elevated (39). "Trace" blood urine ("normal"). My rheumatologist did a Protein Electrophoresis Blood panel, and it's all "normal range" but, each one is the highest number in that range (Gamma gobulin 1.4, with 1.4 highest, alpha 1 gobulin 0.3 with 0.3 highest, etc.) and other tests, which barely scrape the low ends of "normal." Even a spinal tap was done and normal (trace blood, but they say from needle puncture).

I've had bad knees for a couple of years, so that hurting isn't new. But I've had weird things, like no reflexes in my left leg (banged on knee, scraped bottom of foot, no movement but I felt it). I do have a couple tests yet to complete (head MRI, upper endo w/colonoscopy). I get big toe pain, but no obvious swelling/redness to suggest "gout." I've had depression/PTSD for several years (my daughter died when I was with her) but I think under great control, although last month I had a "psychotic" episode which was new (a grocery store incident I'd rather not go into, embarrassing and NOT like me at all) and I cry at the drop of a hat.

Sorry if this is long, I am just tired of all the appointments, hospital trips, etc. when I am feeling so poorly to begin with. I am coming to the Lupus board because it was a word that my rheumatologist was making reference to, she said something is obviously up with my sed rate, crp, positive ana, fever/chills of unknown origin but she wasn't going to try to put it all together yet. I am so tired...it's the first year ever I don't have a Christmas tree up, not one present bought, etc. Just showering once or twice a week is horrendous and I need a nap afterwards! This is not me at all...

Thank you all for any thoughts/comments/insights... Hugs (Sjogren's ruled out, no dry eyes/mouth)

Post Edited (LadyLynda0712) : 12/22/2017 8:29:16 AM (GMT-7)

Hi, thank you, Lynnwood! I did not know that about Sjogren's. I get a lot of sores in my nose (never mouth, though) that really hurt, never thought much about it. I did have a 3mm calcium stone in my salivary gland 3 years ago that caused one of my parotid/salivary bad flares but now no stones and my glands swell up for no reason.

I'm not doubting my rheumatologist because sadly, I haven't been told ANYTHING yet--Sjogren's and Lupus were two things she mentioned during my physical. It has been just weeks of testing, blood pokes (I'm a hard draw so bloodwork is a chore, and those cultures, good grief...I was in the lab close to two hours!) All I know for sure is I have a raised sed rate, high CRP, positive ANA, and a body that is totally out of whack. It's like one thing will pop up, like a parotid infection, so I treat that for two weeks or more, then that goes away and within a week, it will be a rash, a coughing episode that can last days to however long it wants and I'm coughing up blood, that will go away, then I'm in the ER with SEVERE abdominal stuff and vomiting...it just doesn't end. I'm miserable.

I will go poke around www.lupus.org and see what I can find out. I was just wondering if some of the symptoms I'm having that I listed above and in my first post are Lupus-type symptoms that you (collectively speaking, as a group) deal with. I just want to put a name to this so I can start treatment of some sort to feel better.

Another very informative site is the Johns Hopkins Lupus site....
https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/

I know this is a couple weeks ago so I hope you see this. So, you are a conundrum to the docs, have a positive Lyme test, and laundry list of Lyme symptoms...

testing for Lyme and other tick borne infections is sooooooo bad. It cannot be relied upon alone to diagnose.

Most doctors are not trained in properly diagnosing tick borne infections. I suspect all of the doctors that are trained in tick borne illness would diagnose you based on the IGM.

I hope you see this and explore further. Come post over in the Lyme boards!