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Lyme: Is this possible?
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Lyme: Is this possible?

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
ANCA NORMAL
CRP 0.50
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 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.

Thanks
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8 Comments Post a Comment
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Avatar_n_tn
Well my tonsils have been very swollen as well! I have also been told that I need to have mine taken out! I have also been having problems like you! Here were my symptoms they might help you! I was tested positive for Lyme yesterday my dr told me he is sending out to be tested again to make sure They usually test twice if the first one comes back positive I guess!

Here are my symptoms (but not limited to!)
twitching face muscles
tingling in cheeks and nose
stiff neck
increased floater (little black spots in my vision)
over sensitive to light
decreased hearing (feels like I have cotton in my ears)
diarrhea
constipation (when I don't have one I have the other like a cycle never normal)
joint pain and stiffness (Mostly ankles, knees and hips)
stiffness of joints and back
muscle pain and cramps
chest pain in my ribs
heart mummer
night sweats
unexplained shaking
weakness
numbness in limbs (arms and legs)
poor balance
increased motion sickness (never had if before)
sometimes I feel lost when I'm not
I go into a room and forget why I was there
or call someone and forget why or who till they talk then I know still forget why
difficult staying asleep at night
depression
really bad memory loss
confusion
cant find words I want to say when I want to say them (simple ones like bag or something like that)
I too have swollen glands all over mostly in my head (tonsils and behind ears)
my symptoms change day to day. Some are always pretty much there days they are better then others and sometimes they are different all together and they care always moving from body part to body part)
I felt like I had the flu about 2 years ago and I have just not been able to feel better since only worse!
I have a low grade fever from time to time about 100.6 is my normal
and last but not least I have developed a allergic reaction to UV rays! if I go tanning I get violently ill the next few days following to the point that I can't get out of bed.

I don't know if this helped you! But I hope it did!
I think you should talk to dr and demand he test you for lyme!

You can email if you have more questions or if you find out more I just stumbled across this site I was looking for information too!

my address is ***@****

Good Luck!

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Avatar_n_tn
Hi you need to have igenex lab testing for lyme! this is where your answers could be and fry labs for coinfections. they have a website just google igenex and order the kit and yor doc will order the blood and then send it to them and you will get some answers but this is the best place to start I didnt get a pos test until igenex. and fry is the best for coinfections
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Avatar_f_tn
Symptoms are consistent with lyme.  Sounds like  HIV has definitely been ruled out.
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252492_tn?1205612898
Yeah, I actually even had ONE more HIV test done on 2/14. Negative. But somehow I'm not convinced. Not with all the symptoms and no answers.

Wouldn't I remember getting bit by a tick? And how long does it take from bite to symptoms? All of my symptoms began in July and have progressively gotten worse. I even have a rash on my legs, etc. It's gettin' old :)

Thanks
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Avatar_n_tn
well igenex even does more accurate HIV testing aswell
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Avatar_n_tn
Also Lyme shares so many symptoms of so many illness including AIDS. I really would take focus off AIDS and focus on lyme becuase it really sounds like what you have, dont wait the longer you let lyme go the worse it gets!
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Avatar_f_tn
Less than 50% of people with lyme recall a tick bite or EM rash.  I never saw a tick but had 3 bullseye rashes.  I didn't have a clue at the time what the rash was but my husband and I really thought it was the weirdest looking rash we ever saw.  I have had weird rashes ever since the first 3 which were in 1992!
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Avatar_n_tn
Have you been checked for Lupus?
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