|Needing advise PLEASE!!
May 12, 2007
Hi Dr Bob..im not sure if this is your area of expertice or if this is even the correct forum but I have been reading your postings alot and I really understand and respect your opinions and advise, not to mention you keep it light hearted and humorous and when dealing with this disease that helps alot!!!
I really need some advise and guidance.
I am a gay man (not open) living in a small Arkansas community, I have a partner and him and I have been together for over 2yrs now.
Before we started dating neither of us had an HIV test and we preferred to have unprotected sex. He was diagnosed in July of 06 and I was diagnosed in October of 06. We do not know who infected who or who infected us but im pretty sure that I infected him.
Neither of us are on any HIV meds, his coutns are relatively good, mine; not so much. I have refused to start any kind of treatment because I work in a very closed-minded work place (very 'good-ol boy and very old fashoned. I have an excellent job and don't wish to leave. I am not out at work and nobody knows of my status.
My clinical nurse has urged me to start meds ASAP (viral load is very high and tcell count is very low) but origionally I was scared to because im on a group Ark BCBS plan and I don't want to run the risk of my employer finding out because I am 100% sure that I would be fired (people have been fired for ALOT less there). Im am VERY familiar with HIPPA laws and I know first hand that they are not followed to a T.
So that has been my 'excuse' for not starting treatment (not to mention im extremely stubborn and bull headed LOL).I was/am slated for the Merck Genotyping and trial treatment but event's in the past 2 weeks have changed my mind and want to start treatment immediately.
Here is the list of my recent symptoms. Get ready because its a long list! LOL
1)I have started to have these very high fevers (sometimes up to 104.0 to 104.5) and I am on an ibuprofin regimine that if I don't take atleast 800mg to 1000mg atleast 3 to 5 times a day I spike a massive fever and have bad chills and shivers.
2) I have been experiencing constant diarreah and will go to the bathroom atleast 10 to 12 times a day..my ass hurts now!!!
3) I have constant stomach cramps and frequent neasuea. I cannot eat and I am on a diet of applesauce and plain rice. I drink fluids constantly (mostly water sometimes juice in the morning).
4) Im having a very hard time sleeping and I will wake up in the middle of the night and my bed and pillows are completely soaked with sweat.
5) I had been taking a multi-vitamin to help supplement but I cannot take it anymore because of the overwhelming neasuea (no vomiting yet)
6) I have been on Dapsome since Feburary (i was on bactrim but i had a bad allergic reaction back in Janurary) to help keep pneumonia away but recently i started coughing constantly, I will cough up clear phleghm and that's it. I've had the TB, Hep A, Hep B regimines and I have built a good resistance to all 3. I have also had the pneumonia vaccanation.
7) I have had throbbing headaches and diminished hearing. It feels like I have changed altitudes and I cannot equalize my ears, it gets very painfun! Not sure if that is related to the HIV or simply job stress (which I have ALOT of).
and last but not least I started to develop Thrush all over my mouth,tounge and tonsils. My partner recomennded that I start taking a pro-biotic (Acidophilous) every day and in the last week the Thrush has seemed to diminish and is almost gone.
Well that is my list of recent symptoms and I have to admit that it has gotten me VERY scared and afraid. (By the way my partner is asymptomatic and has been since his diagnosis)
I spoke to my clinical nurse today about starting treatment immediately and needless to say she was pleased to hear the news.
I spoke to her about my recent symptoms and she informed me that all of the symptoms are normal for someone who needs treatment but has yet to start. She has advised to keep treating the symptoms as I have been and keep drinking lots of fluids.
I guess all in all im seeking any advise, suggestions and any additional over the counter treatments that might help. I hope to hear back soon because I miss eating and taking a solid sh-t! LOL
I truely enjoy reading your colums and look forward to your response! And WOW, that was a long post!!
Scared in AR
Response from Dr. Frascino
Hello Scared in AR,
I found your story quite amazing and somewhat sad. Amazing in that anyone would consistently and repeatedly make such unwise decisions. Sad because the consequences of those decisions are now becoming manifest.
First, deciding to have unprotected sex with your partner. Even living in Arkansas, you must have known this was risky. And obviously this was not the only time you had had risky sexual behavior.
Next, refusing medical treatment because you "work in a closed-minded work place . . . are not 'out' at work . . . (and) don't want to run the risk of (your) employer finding out . . . ." So you would rather risk your health than your job, being outed or having your employer find out you are ill???? I'd say you passed "extremely stubborn and bull headed" long ago and are not into the "dangerously unreasonable" stage.
Regarding your symptoms, these are indeed worrisome. I do not agree with your clinical nurse that these symptoms are "normal" for someone who needs treatment for HIV but hasn't started yet. Rather I would say your symptoms are highly suggestive of a significant opportunistic process either an infection or malignancy. I would be particularly concerned about MAC (mycobacterium avium complex) or CMV (cytomegalovirus) among other illnesses.
You asked for my advice, suggestions and "over the counter treatments" that might help. OK, but you may not like what I have to say.
1. The time for "over the counter treatments" is long gone.
2. You are quite ill and need immediate evaluation and aggressive intervention.
3. I strongly urge you to seek the help of an AIDS specialist physician, not a clinical nurse.
4. It's time to stop hiding behind ridiculous excuses and get the urgent help you desperately need. If you don't, you soon won't have to worry about being fired, because you'll be far too sick to work. Procrastination has already taken a severe toll on your health. There is a difference between being stubborn and bullheaded and being foolish. Stop being foolish and get the help you need immediately!
How much is too much?
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