auto immune problems

[da1tjo]

My aso titer is up has been for 7 years , I've been dx with EBV and my infectious disease specialist is out of answers. I feel like ****, muscle weakness, fatigue, mood changes, hand tremors. Memory loss,. my labs are ASO 400, EBV 1200,bun creatinine 36, ana 1.80, copper level 127 low those are the abnormal levels, the tsh , normal, ck normal , folate 13.85, also c component low. I have no idea what all this means but neither do my doctors,. EEG normal , Brain MRI normal.  Have had kidney infections and was put on Iv's 3x before. I'm just wondering if anyone has any help for me. Thanks.

[PlateletGal]

Try C & P'ing this link. If it doesn't work, you may have to type it (this is the shorter link = ) ) and then, click on "diagnostic tests" for CFS & fibro.

http://groups.msn.com/Neuro-ImmuneSupport

[PlateletGal]

I also have CFS and a positive ANA. Do you have any overlapping conditions such as fibromyaglia ? The reason why I ask is because 21.5% of fibromyalgia patients have a positive RF. Have you seen a rheumatologist yet ?

[whinybutwell]

My computer couldn't find the link you gave.  I'm -- also -- trying to diagnose an immune disorder that i've probably had for 20 years.  For years they diagnosed it as CFS, but a few years ago I came up high for anti-nuclear antibodies (ana) and Rheumatoid factor (rf).  I also tested positive for Hep C, and did the "cure" last year (a whole year of my life sick as a dog from the interferon/ribavirin, but i'm clear!!).  I still have symptoms though, and my doc ran my "inflammatory panel" again, and still got high ana and rf.  So...he says it's something, else, and something besides CFS which doesn't show that (even though i have a high EBV titer, from having mono in high school).  I'm not sure if post-viral syndrome fits the bill (need to look it up), but i know it's not RA, and not auto-immune hep c, per rheumatologist.  It's really depressing to have gone through so much hell and still feel sick, but i'm determined to figure this darn thing out!

[PlateletGal]

Hi Kickstar,

Post-viral syndrome = Chronic Fatigue Syndrome / ME.

You  may want to check out my website. I post the latest research on CFS and treatments:

http://groups.msn.com/Neuro-ImmuneSupport/diagnostictests.msnw

[kickstar1]

Hi PlateletGal,

I have the same symptoms, no doctors were able to help me but I did my own research and I think I know what it is. Since my EBV anti-bodies are off the chart (all three of them) I am pretty sure I have the Post-viral syndrome. You should google it and you will see...

[PlateletGal]

Don't give up... keep researching and as tumbleweed said, push for more testing. If you haven't talked to your physician about lyme and CFS. Also.. has your physician talked to you about the significance of a low copper level ?

Good luck !

[tumbleweed1999]

Have  you had labs for Bilirubin, Alkaline Phosphatase, ALT, AST,  ASMA -> complete CBC?  My first set of labs (July this year) was 12 !!!! vials worth!.  That was followed by a liver bx (biopsy) -- piece of cake -:).  Followed by dx (diagnosis) of AutoImmune Hepatitis (not- viral, non-contagious).

Personally, I would push for more labs, maybe and ultrasound, and depending on results, the bx.  AutoImmune covers a whole bunch of different diseases, but needs to be found if that is what is at the bottom of all this.   Google "autoimmune" and see if that helps you at all.  May help you have more questions for your Dr.

Good luck and keep questioning.

[PlateletGal]

oops --- just saw that your physician DID order a brain scan and that it was normal.

[PlateletGal]

Do you have Chronic Fatigue Syndrome ? Up to 25% of CFS patients have a positive ANA titer (usually a low one) and often high EBV titers.

You may want to ask your physician to order a cortisol (AM) level on you, hormone tests, an MRI scan of the brain and rule out postural orthostatic tachycardia syndrome.

Feel free to send me a private message if you have any questions.

Best of luck to you !