here is my story....i have been to so many dr.'s no one has helped, and i am going nuts looking for answers.--------------------------------------------------------------------------------
don't know where to look for help. i have been to 9 (3 gen. prac. -2 ENT - ID/HIV spec. - gynecologist-dermalotlogist-rheumatologist) dr.s and no one is helping me, i know something is wrong. please if anything sounds familiar, let me know.
it all started in AUGUST 10 months ago:
-i developed these red pimple sized bumps on uvula and soft palate. they were followed with smalled bumps all over the palate.
-low grade fevers started
-fatigue
-weight loss
-very sore throat and mouth. i was DX phanyngitis 2 times, the pain never went away with antibiotics.
SEPTEMBER
-it all continued and got worse
-back to DR, more antibiotics, pain never went away, nor did the growths.
-glands started to swell
OCTOBER
-decided to get a new DR, because this guy was just telling me these viral things tend to hang on.
-saw ENT, in our tiny little backwoods town-he said HIV can do this to your mouth.
-tested negative at 3 months since last unprotected experience.
-glands still
-he also said he thought it was STD
-went to gynecologist, tested neg. for all STD's. she sent me to big city hospital.
-my face, breasts and arms turned beat red for weeks.
-low grade fevers continued.
-night sweats
NOVEMBER
-fevers still
-strep throat
-glands
-aches and pain
-i felt like there was poison coarsing through my veins, it was an effort just to walk my kids in school
-new ENT biopsied my mouth, and it came back as hyperplastic squamous mucosa-he had no idea what caused it, but that it was benign, for now.
-burning on tongue
-night sweats
DECEMBER
-more fevers.
-swollen glands still
- hit a 39lb weight loss in 3 months.
-started to inprove a little
-mouth problems never improved
JANUARY
-again neg for HIV, ENT said that is not the problem
-tonsillectomy and adenoidectomy
-fevers
-oral thrush
-started to gain weight back
FEBRUARY AND MARCH
-everything listed above, no changes
APRIL:
- again conclusively HIV negative-ID confirmed this with viral load testing. 8 months. she said definitey not.
-back to square one. i do not feel right, i have had low(just barely) RBC, HIgh, then low WBC. HIC MPV? what ever that is?
-9 months later still swollen glands
-my chest is still red w/ raised bumps.
-still having fevers?
May:
-derm. said my rash was sun damage...rheumatologist did not agree, because it is not noticeable in the morning, but very red as afternoon goes on. it does look like sunburn almost, but there was no sun exposure for months when it was at its worst
-derm tested my iron it was 10 (ref range 20-50), and never even called me to tell me it was low. i've had to call them repeatedly for 2 weeks to get those results
-rheumatology tests were all negative
-i have another appt. with the ID she has agreed to run a western blot, and re do the HIV tests. this will be 10 months.
it is all so scary, if i am healthy, i want another baby so bad i can't see straight. but i feel HIV is it, what else can it be? i am looking everywhere for answers, and all the dr's are giving me different answers. my gen prac. says she firmly believes in here heart HIV can take a year or more to show up, but CDC says 3 months. i am so tired of this. i just want to know what is wrong and get on with my life.....
Wow! I have all of your symptoms except for the rash. My doctors too don't know what it is. I feel like it is getting worse, but the doctors don't seem to care. I too have had so many tests, and as far as I know, all of them have turned out normal. My old ENT thought it was lymphoma, but he said since my blood tests (CBC, Sed Rate, and ANA) came back normal that it wasn't. I had another dr. tell me that they can't do anything until either I have more symptoms or my lymph nodes get bigger.
So I guess I'm at the point that I don't know what to do anymore. Let me know if you have any ideas or if you just want to talk.
they are not even paying attention to the glands...one says they are not that big, the next says it shouldn't be going on for a year. they all have diff. story. were you tested for HIV? did you have any biopsies? i'm telling you, everything about my body looks different. i was really sick for about 5 months. how did oyur throat changes occur? is your soft palate or mouth involved too?
You say you live in a backwoods town. Do you have any exposure to the woods? If a tick could have bitten you, you may have been exposed to the rickettsial organisms. Lyme disesase (b. burgdorfi) is front and center of these, but there are also babesia, erlichia and even c. burnetti (Q Fever) to think about, although the latter is more typically caught straight from livestock.
These can all be tested for. You may want to look into an Infectious Disease specialist, particularly a lyme-literate one. Keep in mind there is also a controversial theory that AIDS can occur in the absence of HIV ... some scientists believe a variant of HHV6 can do it in conjunction with TB.
My wife suffers from fibro and recurrent DVTs, and something very strange (and so far undiagnosed) hit me in mid-January. Answers are hard to come by, but much of the latest science is right there on the internet if you want to search for it.
With the disconcerting oral issues, have you looked into the possibility of HPV in the mouth? That one can increase the risk of all sorts of bad things happening.
that's interesting, because my gynecologist first opinion was HPV, but when the ENT biopsied it, he said no signs of HIV or HPV. but oddly enough this all occored starting 5 days after unprotected oral sex. my mouth was expose to spermicide, so i know it was open skin, and followed by the intense viral illness...HIV was the biggest fear.
the ID i am seeing didn't think that is anything infectuous, but how could it not be, seeing that auto-immune tests were negative?? she feels 8 months negative is negative, especially with no virl load, although i have read these rare cases on the net where it has happened. as for the non HIV aids it is actually some type of lymphocytopenia (mayb?) disease which is not contaguous, but she checked my T-cells, 700 something, which she felt was well into the normal range. i can tell she is reluctant to do further HIV testing...but she wants to pacify me.
my appt. is monday, and i will be asking about lymes. i am surrounded byt he woods, and ticks at my home, but do not remember being bitten. also i feel a lot better than i did 5 months ago. but still not right. this woam is ID dr. at a teaching university, and was the head of an HIV clinic for 6 years. she said the other day "i don't think there is any chance this could be HIV-you can safely have sex with your husband" but rare things have happened and sometimes do. i was wondering if any of this seems suggestive of fibro, i don't know where to turn next.
Re: This is my story...please help. 
Re: This is my story...please help. 
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