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.....

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

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.

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.

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

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 :)

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

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

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

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.

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???

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.

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:wave:







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???

i've been at a university hospital for over7 months now....4 of the dr's i've seen are there. they are the ones just sending me home. the only one who did anything at all was the infectuous disease dr. who initially said she did not feel it was infectuous and sent me to a rheumatologist. then those tests came back negative, and he is sending me back to an infectuous disease sepcialist again.


the glands that are still enlarged are right under my chin, they are still up and down, but never normal.

thank you guys for the info...it's more than the dr's are giving now.

where are the salivary glands located, and how did your oral problems progress?

Could be Mayo time. They tend not to quit until they have a real diagnosis.

I WISH. IF I ONLY HAD THE MONEY...OR THE TIME. MY KIDS HAVE SUFFERED SO MUCH THROUGH THIS, BECAUSE I WAS NOT WELL ENOUGH TO BE A MOM FOR THE LONGEST TIME.

THIS HAD DRAINED US FINANCIALLY. INSURANCE ONLY GOES SO FAR. AND CO-PAYS REALLY ADD UP.

IF I COULD FIND ONE DR WHO WOULD TAKE ME SERIOUSLY ENOUGH, NO MATTER THE DIAGNOSIS, IT WOULD HELP.:confused:

Thank you so much everyone for your replies! I really, really appreciate it!

I too have been to a university ENT and he told me I have heartburn and sent me home. I don't have heartburn. I know you can have it without feeling it, but it does not account for any of my other symptoms.

As for lyme, I have not yet been tested for that. Thats a good idea too because I get ticks on me from just going in my back yard even though I live in a major city.

Sundance, what symptoms did you have if you don't mind me asking?

I just started going to a new ENT now, so he just put me on antibiotics, (which I have been on numerous times before to no avail). He said if my lymph nodes don't decrease in size after the drugs he will look into other things.

Does anyone have any ideas of what it could be? I am even thinking of listening to my past doctors and just living with it and not to worry. They said it had to be nothing because my CBC, ANA, and SED RATE were normal. But my lymph nodes seem to get bigger and they are hurting more. I just don't know what to do.

Sorry about my rambling and thank you for listening. I hope all of you are doing really great!

~Nicola

I didn't have time to read through all the messages, but I got rid of my strange fibromyalgia symptoms by having my mercury fillings removed over 13 years ago. Previously, I started taking many different types of herbs to remove toxins and that helped too. I did lots of reading about herbs and natural healing because doctors could not help me. Today, it's been 29 years since a doctor told me to not run more than a hundred yards in 1978, and I'm still running nearly 20 miles a week. I still have my ups and downs as I'm getting much older now, but I persist with my healthy diet and I still take my herbs. I'm so glad I got rid of that mercury...I don't care what other say about it's safety...it wasn't safe for me.

Often if doctors can't find a cure within their knowledge base, then you have to find it outside of their knowledge base. I have to believe that there is something that is poisoning you, or something that is causing this "allergic" reaction or condition. It could be almost anything...I hope you can find out the cause. The wonderful thing about the herbs for me, is that it helped pull out the toxins. If I took too many of them, I would get a very itchy red rash.

hey there~
I am really sorry to hear of all your misdiagnosis... and I say this with regret... for it is obvious that something is happening huh? geez... I had big growths growing on my neck as well... and I was told that I had a bad cold and was put on antibiotics... I was told that I had saliva stones... and to stop at a store on the way home and get some of those lemon candies that all the kids like and eat a box or two of those... and that was suppose to help me to salavate correctly.... I thought I was turning into a frog for under my chin was getting so big and puffed up that I swore God was trying to tell me that I needed to find a Prince to kiss me.... and then I felt the lumps growing. There were a few of them... and luckinly for me... thyroid cancer usually does not grow that big in size, yet mine did... so after a couple years of all kinds of uh... bs... for lack of a better saying... I was finally diagnosed with the thyroid cancer.
And I had asked other doctors to check my thyroid many times during this time and it kept coming back negetive or fine... and I was told many times not to worry about it.....
Do you mind me asking how old you are and where you are doing all these tests at?
Please take care, Sundance

i'm not sure which one of us you're talking to anymore. the board has grown :) but i was 26 when this started, 10 months ago, and i am in the pittsburgh area. i started out with the small town dr's, and then went to the university dr's for the past few months....i have gotten my hopes up before every appointment.

the dermatologist there is calling my rash sun-damage(and it does look very red, like a sunburn), but it appeard out of no where in october, along with this viral type illness...remember me mentioning the HIV fear? and the HIV dr. even said it did resemble the rash seen initially with it, but it does not last 8 months or more. it is still there.

the rheumatologist said put HIV out of mind. he also says auto-immune tests were OK, but slight inflammation was indicated, more likely an infection.


the infectuous disease doc/hiv specialist says she is not convinced my symptoms are infectuous.

then what the hell am i supposed to do?

the ENT (current one) also has no explannation for what is happening (the hyperplasia) to my oral/throat areas.

the fevers have really slowed, i am feeling closer to normal, but i am in the mirror all day looking at my mouth. i am constantly feeling the glands in my neck. where actually is the thyroid located? and i am surely packing that 40lbs back on.

i know this was not just some run of the mill virus...it lasted for over 7 months. i have an ID appt. on monday, i'm about to hock my jewelry to get there.

I hope all of you are doing well :)

Sundance~ I am only 20 and my symptoms started two years ago when I started getting throat infections. After antibiotics didn't help the doctors decided to cut out my tonsils. They told me everything would be fine after that, well it didn't help at all. So now I have been to 3 ENT's, 2 PCP, and 2 ER doctors in the Milwaukee area.

To answer your question star~ My first ENT thought it was lymphoma because I had all of the symptoms (Low grade fevers, night sweats, chills, itchiness, swollen lymph nodes), but he said I didn't have it because when I had a cat scan and blood work it came back normal. He said not to worry about that because it would show up.

Thanks for listening!

~Nicola

To answer your question star~ My first ENT thought it was lymphoma because I had all of the symptoms (Low grade fevers, night sweats, chills, itchiness, swollen lymph nodes), but he said I didn't have it because when I had a cat scan and blood work it came back normal. He said not to worry about that because it would show up.


Trust your own body's signals more than what hired-hand doctors say:

http://www.healthboards.com/boards/showpost.php?p=2891941&postcount=132

In the last two weeks it has gotten so much worse. My lymph nodes in my neck have gotten really huge, I am not sure if this is a lymph node but right below my left collar bone is a big bump that hurts, and I just found some in my abdomen too, it hurts to breathe at times, and I have completely lost my appetite. Some days I don't even have a meal. I have an appt. scheduled w/my new ENT on Wednesday the 23. He said that if my lymph nodes didn't go down in size by then he'll consider looking into other things.

Can you have cancer even though your blood work and neck CT is normal? I just don't know what to do. What does this sound like?

I am so sorry, I'm just rambling again and complaining.:eek: Thank you so much for listening. I just feel so alone, and talking with wonderful people like you makes me feel better. Sorry this is so long and thanks again for listening!

~Nicola

believe me, u are not rambling or complaining....just reaching for help...i am in the same place.

i cannot stop wofearing HIV. a lot of people on the HIV board are telling me no way no how if tests are negative at 8 months...i am going for 10 month tests monday. CDC says 3 months is sufficient. and they say you can't diagnose my symptoms, but come on, i don't know what else this can be, and different dr's are either saying possibly HIV or i just don't know. that's why i am "exploring" other possible illnesses. why aren't they.


how can i find a dr who will take me seriously???? my glands in my necw were the bothersome ones. should i be able to feel any under my chin normally? the left side isn't too bad anymore, but the right side is. it feels like a golg ball under there. then the past few days i have been feeling pain in my arm pit, but cannot feel any. i have this red rash all over my chest and back, kinda sunburn like, but blotchy. then i keep getting these pimple like things on my chest. 10 months this has been happening. and i am geltting these black spots in my mouth, like a pencil mark, but they go away in a day or two. none of these things ever happened to me before.

nicola-
i wonder about the cancer too? i don't care what the blood work says, it is obvious something is wrong with the both of us. test for anything and everything you can.
how long has this been going on? fevers still?

sundance- where exactly is the thyroid? what kind of dr should i see about that possibility?

sundance- where exactly is the thyroid? what kind of dr should i see about that possibility?

The thyroid is a butterfly-shaped gland on either side of your windpipe, just above the top of your breastbone. It can get very swollen if you develop a goiter as a result of too little iodine (which is why table salt is iodized).

Endocrinologists treat thyroid problems.

These are oversimplifications, but in general:

Too much thyroid hormone can make you bug-eyed, thin, and excessively energetic.

Too little will make you lethargic, overweight and sickly.

If I were you I would go for the 10month test too, just to be sure and for peach of mind. I'm sorry you are having such a hard time finding a doctor who cares. Have any told you its all in your head yet? Yup, they did that to me. I was so angry, how can I swollen lymph nodes, fevers, ect... be all in your head? Needless to say I have had the same difficulties with that as you. Its like, if they don't know what it is, they either tell you its in your mind or just send you home.

Your swollen lymph nodes are round right? Mine are weird, they are like long strips (I don't know how else to explain it). Yes, my arm pits hurt too, and I try to feel for a lump or something but I can't tell. Yes I still am getting fevers. Well, my first symptoms started two Marchs ago, so that would be two years and two months.

Do your doctors have any guesses as to what it could be?

I hope everyone is doing well, and thanks again for your replies, it really helps me! ;)

~Nicola

Did anyone out there have normal blood work, but then later find out you had cancer? If anyone has any similar experiences, it would help me substantially :wave:

Thank you in advance! You are all wonderful people to be taking your time to answer someone else's questions, whom you don't even know! :angel:

~You are in my prayers~

~Nicola

in the early months my gyno and my 2nd ENT kinda thought it was in my head, i was causing my stress then making myself sick. they weren't worried about HIV. they told me i was stresing too much over the fact that the 1st ENT told me it looked like what HIV did to your mouth.

then the infectuous disease dr said she felt it was not an infectuous problem. rheum. then ruled out auto-immune. where am i supposed to go from here?

it's crazy i would love for this to be something anything that just had a name. i want to know what is wrong. i want to know if i can have another baby.

today i have an appt with the ID, she is reluctantly going to do a western blot, which is not done on someone without a positive antibody test. i don't know if she is doing it to reassure me or to confirm my fears.


all in all, i am feeling better physically, fevers and diareah have been greatly reduced, along with ached and pains. still fatigues. and this gland under my chin is the size of a golf ball, but none of then are too concerned, not to mention this rash like thing. little reddish spots all over my chest and back.


gook luck all of u. wish me luck today.