A host of things wrong, with no diagnosis.

[thanx4helpin]

I 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
HLA-B27 POSITIVE
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


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?

[Arevalo21]

I've been told that Hashimotos can cause heart palps but since i've other symptoms i want to rule everything else out. I was tested for Lupus some time ago, but that test came back negative.

Perhaps you should get tested for Lupus thanx4helpin it would be one of the things to rule out. I hope you get some help and answers soon. I'll be praying for you.




  

[corky07]

I don't know if you are an outdoor person. But is there a chance you could have been bit by a tick or a nymph and picked up Lyme Disease.  I have Lyme and every thing you have discribed rashes, sweats, mood swings, some of the test results could all point to Lyme you should seek out a Lyme Dr. in your area and request a Western Blot test if there is a chance you could have been exposed.  Good Luck.

[susanlackey]

sounds somewhat like lupus,also

[DLA]

thanx4helpin--Rheumatoid Arthritis causes a lot of the symptoms you are describing, including the rash on the backs of your legs and the fever.  It also affects a lot of organs in the body.

Arevalo21--the Hashi's can cause the heart palps even when your numbers are supposedly "normal".

[Arevalo21]

oh, i forgot..recently i bumped into a new symptom..i am going to a cardiologist because i have unexplained high pulse rate it was up to 160 and i was just sitting down at work..very calm. I also have hashimotos thyroiditis but according to the blood tests everything is normal the only problem is that my gland is enlarged.the most recent tests were done on march 3rd so its been recent..well, let me know if you have any answers ok? thanx!

[Arevalo21]

hi =-)..just wondering maybe it's completely off..but have you been tested for hodgkins lymphoma?..the swollen lympnodes and nights sweats fall under symptoms. any weight loss? You know, I experience some of you symptoms like fatigue,enlarged tonsils,a swollen lymph node..painful i must add under my chin, and a blushed look on my face and i've had a  low grade fever too. all this begun after i had my daughter in '06.havent been tested, to be honest i'm afraid but i highly doubt that this is an hiv infection. perhaps we will both get and answer. take care!

[thanx4helpin]

The rheumatologist says that my HLAB27 has nothing to do with my current symptoms. I've also started itching everywhere, and have really bad skin changes all of a sudden. WHAT could this be? I had another HIV test on March 17th and it was NEGATIVE. That's the only thing this sounds like and yet I keep getting negatives! Anyone going through swollen lymphnodes, night sweats, keratosis pilaris, etc? Please help!

[Theriophile]

I noticed your HLA-B27 was positive..So, definitely see a good Rheumatologist and get some direction and hopefully some relief!

[siron]

Try seeing a reumathologist.  
I have had similar sympthoms for several years and tests always came negative. Doctor kept doing same tests over and over.  It wasn't until I recently changed doctor that we have started to find out what I have.
ANA is a general test. There are other tests for diagnosis of auto immune diseases  (various SS tests)  There are other tests for specific autoimune disorders.  My ANA tests, as well as my T3 and TSH were normal.  After several years of suffering, my new doctor order more specific thyroid and metabolic tests.  I have hypothyroidism and being treated.  I also have sjogrens syndrome (autoimmune system) which makes my salivary glands swell and attacks other organs of my body.  Sjogren's can also attack the lymph nodes and the heart.  Last night my doctor called and said my x-ray showed an enlarged heart that I never had before. Many times people and doctors think that one is crazy.  I understand you very well. It has taken me several years to get at least some results.

Recommend tell doctor you want all specific tests for autoimmune diseases.  Also go to the arthritis foundation site.
Hope this of help.
siron