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Old 05-14-2007, 07:00 PM   #1
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This is my story...please help.



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.....

 
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Old 05-14-2007, 07:21 PM   #2
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Wink Re: This is my story...please help.

Star~

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.

~Nicola

 
Old 05-14-2007, 07:25 PM   #3
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Re: This is my story...please help.

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?

 
Old 05-15-2007, 04:08 AM   #4
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Exclamation Re: This is my story...please help.

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.

 
Old 05-15-2007, 05:18 AM   #5
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Re: This is my story...please help.

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.

 
Old 05-15-2007, 05:18 AM   #6
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Lightbulb Re: This is my story...please help.

There's a long list of things to try by Dr. Teitelbaum of the "fatigued to fantastic" book fame ... many are simple and cheap, others are expensive and complicated. But people with fibro/chronic fatigue or anything similar who aren't getting answers could do worse than simply keep experimenting with different approaches that have helped others.

 
Old 05-15-2007, 12:50 PM   #7
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Wink Re: This is my story...please help.

Star~

I too agree that the doctors are not paying enough attention to my glands. Now they are so swollen and painful that I can't even turn my neck very much. My doctors also said the same thing, that they really aren't that big. But now, in the last two weeks it seems like they were on miracle grow or something.

Yes, my mouth and the roof of my mouth are involved as well. The roof of my mouth gets swollen and painful, and I seem to get painful red places in my mouth. My ENT said he didn't know what they were, but they were nothing to worry about. Now, how can you tell someone that you don't have any idea what it is, but know that its not worth concern?

I was not tested for HIV. I am in a monogamous relationship so I didn't even think of getting tested for it, but I guess its worth of try. I was exposed to blood in my profession, but I was wearing gloves.

Well, I hope they figure out what you have. What kind of doctors are you seeing now. I was wondering too, do you have any chest discomfort or difficulties breathing sometimes?

Thanks for listening everyone and my thoughts and prayers are with you!

~Nicola

 
Old 05-15-2007, 01:42 PM   #8
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Re: This is my story...please help.



i hope i didn't scare you with the mention on HIV, that was not my intent. i just wandered if it had been brought uo to you. the first ENT i saw said it. but the 2nd one, who was at a university hospital(phd...very smart it seemed) said he really didn't think so. but them again, he had no clue either? he said is is currently benign, so don't worry for now. that's easy when he's not the one in misery.

what made them suggest lymphoma to you?

my neck was the same in november, december. all the way up and down it. i could feel the glands under my chin and coming up my next. major swelling was involved, still is to me. they can't tell me this is normal to have swollen glands this long.

the soft palate area connecting with my throat is where the most pain was centered.swelling, lots of burning/tingling. red spots that come and go as well as the ones that are always there.

my husband has none of these problems, and recently my rheum. told me to put HIV out of my mind after this time. but no one...no one is telling me what to do. we want another baby if my health is OK, but this is all conflicting. one doc says go ahead, another says no. i might add i feel so much better than i did in the fall/winter time. i was in bed most of it, i couldn't do anything.

in oct/nov when things started worsening, i did have pain in my chest....they all ignored that too.

have you seen more than 1 dr, for opinions? i would. i still am.

i will be seeing Infectuous disease dr. again on monday.

please keep coming back. i am curious about your situation....you seem to be going through very similar things as i am.

i could ignore this intense viral illness i experienced if my mouth didn't look like this, or the glands were ok. please let me know how you are

 
Old 05-15-2007, 01:53 PM   #9
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Question Re: This is my story...please help.

Have they done a test for syphilis ... the "great pretender" (looks like everything else under the sun)?

 
Old 05-15-2007, 02:39 PM   #10
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Re: This is my story...please help.

i had it done in december, and it was negative...

 
Old 05-15-2007, 03:54 PM   #11
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Re: This is my story...please help.

Quote:
Originally Posted by *Nicola View Post
Star~

I too agree that the doctors are not paying enough attention to my glands. Now they are so swollen and painful that I can't even turn my neck very much. My doctors also said the same thing, that they really aren't that big. But now, in the last two weeks it seems like they were on miracle grow or something.

Yes, my mouth and the roof of my mouth are involved as well. The roof of my mouth gets swollen and painful, and I seem to get painful red places in my mouth. My ENT said he didn't know what they were, but they were nothing to worry about. Now, how can you tell someone that you don't have any idea what it is, but know that its not worth concern?

I was not tested for HIV. I am in a monogamous relationship so I didn't even think of getting tested for it, but I guess its worth of try. I was exposed to blood in my profession, but I was wearing gloves.

Well, I hope they figure out what you have. What kind of doctors are you seeing now. I was wondering too, do you have any chest discomfort or difficulties breathing sometimes?

Thanks for listening everyone and my thoughts and prayers are with you!

~Nicola
Nicola, have you looked on the Lyme board at symptoms, you live in Wis. which is an endemic state for LD, I know several people who have Ld from Wis. Lyme Literate MD's are listed on the site and there are doc's in Wis. When everything else comes back neg. I would definately start looking into this disease it imitates everything. And I have had to go to the ER for chest pain and breathlessness, but have no heart problems. Check it out, anything is worth a try to figure out what is wrong with you, do some research on it. It is often misdiagnosed. Good Luck, Sarah

 
Old 05-15-2007, 11:13 PM   #12
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Re: This is my story...please help.

Have you been tested for thyroid cancer yet? I don't mean to scare you but I had a lot of the same symptoms as you for about a year before they found out about my cancer. It is a very easy cancer to treat and it is a very slow growing one as well, so the chances of curing it and catching it in time is very good... see if you can see a nose, ear and throat doctor. I was told I had everything from a common cold to salivia glands....
Good luck and Bless you,
Sundance....
please keep in touch and let us know how you are doing.
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Old 05-16-2007, 08:06 AM   #13
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Re: This is my story...please help.



well, in the earlty stages of this, my thyroid levels (very basic i am assuming) was checked, and normal.

i have been to 2 ENT's the 1st was the one who pointed the finger at HIV. the secong basically has no clue...he is a PHD from a university hospital, a professor.

salivary glands were mentioned too, where were your problems???

 
Old 05-16-2007, 12:00 PM   #14
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Exclamation Re: This is my story...please help.

Normal levels of run-of-the-mill thyroid components do not rule out thyroid problems, they merely rule out dead-bang obvious thyroid problems. The real problem may be much more subtle. A good endocrinologist can find the real answer.

You got infected with something. That infection may be dead, done and gone (or not), but the damage to your glandular system could still be lurking ... there are a lot of systems ... the hypothalamic/pituitary axis is one.

 
Old 05-16-2007, 02:09 PM   #15
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Re: This is my story...please help.

Hi there! My story sounds a little like yours. I was just feeling pretty bad most of the time and no one could figure out what was going on... they said I had everything from the common cold to salivary stones and most everything in between. It was not until I visited a ear, nose and throat guy that I was diagnosed with the cancer and they scheduled surgery a week later.... I would definetly try and get that at least looked at... you never know.... good luck. If you are going to a University Hospital you should be in good hands now. Sundance





Quote:
Originally Posted by Staar80 View Post

well, in the earlty stages of this, my thyroid levels (very basic i am assuming) was checked, and normal.

i have been to 2 ENT's the 1st was the one who pointed the finger at HIV. the secong basically has no clue...he is a PHD from a university hospital, a professor.

salivary glands were mentioned too, where were your problems???
__________________
God Bless you all, Arrowmyth O :-)

 
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