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Old 04-15-2007, 08:55 PM   #1
Senior Member
(female)
 
Join Date: Mar 2007
Location: united states
Posts: 177
Staar80 HB User
lost-8 months of misery

i don't know where to look for help. i have been to 7 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 8 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, not did the growths.
-glands started to swell
-night sweats

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.

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
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.

NOW:
-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?

-8 months lkater still swollen glands
-my chest is still red w/ raised bumps.
-still having fevers?

i also tested neg. for auto-immune, butstill have appt. w.rhumatologist and dermatologist

also 4 yrs ago i had granuloma annulare on legs

someone please help

 
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Old 04-15-2007, 09:15 PM   #2
Senior Veteran
(female)
 
Join Date: Feb 2004
Posts: 611
BetsyAnn HB User
Re: lost-8 months of misery

Wow! You have certainly been through alot. I am sorry that I do not have any advice to offer. I just wanted you to know that my thoughts are with you. I hope you are able to get some help very soon to sort this all out.

 
Old 04-22-2007, 01:23 AM   #3
Member
(male)
 
Join Date: May 2006
Location: Louisville, KY
Posts: 56
ddgryphon HB User
Re: lost-8 months of misery

I went through something similar for 6 months--the only thing that helped me was intravenous anti-biotics--orals are worthless it seems in my case. I don't know if that's typical fibro or what. They can adminster these at home--no hospital needed. It is what finally got me half-way human again and over the infection--which clung on for almost 5 months.

Make sure your new doctors know how long you've had the infection and let them know all the oral medications you've been on for the last 8 months. Then see if they're willing to have you do at home intravenous.

Hope this helps.

Quote:
Originally Posted by Staar80 View Post
i don't know where to look for help. i have been to 7 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 8 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, not did the growths.
-glands started to swell
-night sweats

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.

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
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.

NOW:
-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?

-8 months lkater still swollen glands
-my chest is still red w/ raised bumps.
-still having fevers?

i also tested neg. for auto-immune, butstill have appt. w.rhumatologist and dermatologist

also 4 yrs ago i had granuloma annulare on legs

someone please help

 
Old 04-22-2007, 07:08 PM   #4
Junior Member
(female)
 
Join Date: Apr 2007
Location: south central nebraska
Posts: 15
saphirz HB User
Re: lost-8 months of misery

Did they test for West nile ?
It effects people in different ways.
or the other thing did they check for lyme disease?

 
Old 04-22-2007, 07:11 PM   #5
Senior Member
(female)
 
Join Date: Mar 2007
Location: united states
Posts: 177
Staar80 HB User
Re: lost-8 months of misery

NO-NOTHING SPECIFICALLY- EXCEPT hiv AND EPSTEIN BARR-WHICH SHOWED PAST EBV INFECTION. THE id JUST REFERRED ME TO RHEUM (WHICH I AM STILL IMPATIANTLY WAITING FOR)

COULD THIS REALLY BE POSSIBILITY?

 
Old 04-22-2007, 07:20 PM   #6
Junior Member
(female)
 
Join Date: Apr 2007
Location: south central nebraska
Posts: 15
saphirz HB User
Re: lost-8 months of misery

I know 2 people that have west nile, and one was in the hospital for months before the decited what it was, she had breathing tubes, it affected her respitory system, the other its has been a few years since it happened and she has no muscle control in her one leg, that is where the virus decited to attack the worst. West nile seems to be different in people of where it attacks. Remember that is from a simple bite of the misqueto that is carrying the virus.

Lyme does have different symtoms also in people can cause arthrutis and a rhelm of other problems.

sorry for the typos and spelling errors

Last edited by saphirz; 04-22-2007 at 07:21 PM.

 
Old 04-22-2007, 07:23 PM   #7
Senior Member
(female)
 
Join Date: Mar 2007
Location: united states
Posts: 177
Staar80 HB User
Re: lost-8 months of misery

now i am feeling grat....compared to 6 months ago.

but my mouth still looks awful--still hurts..burns...tingles...just does not feel right!! neck is still sore. glands just "slightly" swollen. according to doc. but why should they be swollen, slightly for 9 months>


i am going to mention this to ID

 
Old 04-22-2007, 07:32 PM   #8
Junior Member
(female)
 
Join Date: Apr 2007
Location: south central nebraska
Posts: 15
saphirz HB User
Re: lost-8 months of misery

I hope things get better for you, 8 months is a long time to be sick like that.
I would question if they had tested for those 2 things.
Good luck to you

 
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