Lupus? ANA neg

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New Member

Date Joined Nov 2007
Total Posts : 7
   Posted 2/9/2008 10:22 PM (GMT -6)   
don't even know where to begin. I thought this was something sexual related, since it occured 2 weeks after intercourse with a man (I'm female) but I've now had a seven month HIV NEGATIVE along with a PCR DNA negative and 11 other HIV tests all in between.

So here's how it began.
I've always had enlarged tonsils, later a heart problem that developed after the birth of my daughter (2000), recurring uveitis for the past two years...

so in August my tonsils swelled up to where they touched eachother, and I developed night sweats. The tonsils didn't hurt, and there was one swollen lymph node under my chin. Eventually I was given a tonsillectomy, but the low grade fever, night sweats, flushing, all intermittent. Excessive fatigue that will not go away. Chills. Skin changes (rash on back, on legs), swollen painful lymphnodes on collarbone and tops of legs, and on back of one knee. flushed apperance on the face in the evenings, I just don't feel good :( I used to be overly hyper :) OCD in my cleaning, happy-go-lucky. What the heck happened?

Here's lab work:
HIV Antibodies at 6, 9, 10, 18,19,21,22, 27 and 30 weeks... excessive much ::)
HIV DNA PCR negative at 5 months
HIV ICMA Negative at 5 months
Mono spot and strep test negative
CBC normal - neutrophils and platelets slightly elevated
Sed rate 8
Thyroid panel normal
ANA normal
CRP 0.50
Heart function normal
EBV shows past infection (long ago)
CMV shows past infection (long ago)
CT scan shows mild lymph nodes, nothing characteristic of cancer or that they feel needs biospy but i was on prednisone at the time

If anyone can point me in any directions, I'd appreciate it. I focused on HIV for so long because it followed a sexual encounter, however the guy I was with tested negative with a rapid test 6 weeks after we had sex, and I've had all these negative tests, so symptoms and timing coincidence are just that - coincidence... I need to get to the bottom of what is going on. Please?

My current symptoms are immense pain in lymphnodes with swelling, especially in collarbone and shoulders, knees and groin, forearm and underarms, low grade fever and fatigue with depression from being ill, intermittent night sweats... PLEASE give me any ideas you may have

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 2/9/2008 10:58 PM (GMT -6)   
Hi Tyvm,

Welcome to the forum. I'm so sorry you are going thru all of this. Lupus can be really hard to dx w/o positive blood work (but it does happen). Many members have spent years and years doctoring before getting a dx and many members still do not have a dx.

Your symptoms could be lymes . . . have you had that checked? Lymes forum here at HealingWell too.

A rheumatologist would be the doctor that would diagnose Lupus, Rheumatoid Arthritis, Fibromyalgia and the like.

There are some links in my signature that might be helpful for you. I hope you'll keep us posted.

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 2/10/2008 11:01 AM (GMT -6)   
Hi Tyvm and welcome to the lupus forum.  I'm sorry you are going through this and that you don't have a lot of answers to what is causing your symptoms.  Rosie gave you some great adviceand I don't have a lot to add.  It really can take a very long time to get an accurate diagnosis because a lot of these illnesses share a lot of the same symptoms and it can take some time for labs to show anything significant.
Hang in there and don't give up.  It's so imporant to have at least one doc (hopefully your primary doc) who is really listening and referring you to good specialists who will also really listen and take time to try to figure out what is causing your symptoms.  What does the doc say about the HLA-B27 test being positive?  Here's a good website to explain what positive results might mean:  I think the positive HLA-B27 indicates autoimmune activity so that could be what is causing some of your symptoms.
Let us know if you have any other questions.  Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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