Please check one member’s HIV treatment story.
Details of my condition:
I had been feeling run down and tired for a while, but I assumed it was too much work. I felt tired but not exhausted. Around June 2013 went to upgrade my life insurance. Kept on feeling tired especially at the end of the day. I hated my 1 hr ride home! Went to PCP again and he ordered tests.. Nothing came back out of line. He never ordered a HIV test. Then I got very nervous when he recommended I see a hematology oncologist.. Dear God.. Leukemia crossed my mind.. At this time it was end of July 13. Now am feeling very hot at all times. Not feverish but hot. If I talked for a while I began to sweat. Night sweats also began.. Oncologist ordered more tests. I had received a letter from insurance company saying that there is a problem with tests and that I need contact PCP and have him contact Chief Medical doctor at Insurance co. I was busy with many things and note fell into the back burner. Then on August 6, 13 while at camp I get a phone call from my state health dept. Now I am panicking. Meantime Oncologist calls; some numbers are way off and need to get other tests. Still no one ordered HIV test, nor did I request one. Health dept was nice and explained I needed to come in. Told them that I was on bus. trip next day and be back in 8 days. No problem she says. I am relaxed. Must not be so important. Went on my trip. Now in really hot. Clammy. Felt I needed A/C all times. Came back home on Sunday 8/19/13. Next day was appmt. with health dept. At this point I have began to lose weight. PCP ordered a myriad of tests.. Went to meeting. Nice lady.. Pleasantries, then she drops the bomb: you are HIV+. Can’t describe feeling. felt like falling and falling and yelling and screaming. But I didn’t scream at all! Few seconds later she kind of shook me out of my shock. Don’t remember much. Just she made another appmt. for a week later..Gave me business cards for 2/3 ID docs. Kept going on. Meetings.. A go away party.. But I was shattered. Haven’t slept for 3 days now. Called ID doc. Nice woman answers. She asks “Are you hiv+?” I could not answer.. Words wouldnt come out of my mouth. Went to see Oncologist. Told him.. He got totally unhinged. I felt dirty, tainted. Went to PCP. He says we have to come to the bottom of this.. Told him. It was the most difficult thing ever. Quietness fell in the room. Couldn’t look at him. He couldn’t talk. ID doc sent me for prelim. blood work. Took so much blood I felt queasy, shaky. Had to wait. ID doc had told me to take crackers and snack. She knew. I do feel very dirty now. Didn’t let anyone touch me. Avoided human contact.. Cried at night.. Still had to carry on.. There is presentation at work.. People are worried at weigh loss. Need to turn A/C to cold.. very cold.. I am hot. Dying I think. I panic. I called ID doc million of times. I see white spots in mouth.. They were none. I have a small mole on arm. Swear I saw it grow. I was making myself sicker. then you read horror stories online. Dirty i felt. 9/21/13 I took my first dose! Some side effects. Insomnia set in. When slept vivid angry dreams. I jumped one night so hard I hit widow and broke glass. Called doc. Stop meds asap. Didn’t want to. Read how that causes resistance.. But it was only 3 days on meds. More blood drawn. New meds after fighting insurance co to approve. ID doc told me to stop reading everything. Some of those articles were too old and no longer valid.. Stop making yourself sick! She said. VL was 78K and CD4 were 198. 2 points below threshold. When doc gave me copy of report for state I froze up. AIDS check mark. Fast forward to 2018 and I have been UD since 01/2014 and CD4 gone up to 600-800 mark. Feel great.. Love my PCP, my ID doc, their staffs..They have been wonderful in this journey. Now I only go 3 times a years (every 2.5 months at beginning) CDs are not checked always. VL is. Regained lost weigh and kept going up! While I still gripe with it and hate all related to it, the journey has been relatively easy.
Drugs I take & Dosages:
Genvoya 1 tablet/day
100% It is a medical miracle. We don’t know the long, long time effects but so far it has been great. I was initiated with Atripla and that caused many side effects especially neurological.I was jumpy, tired and not sleepy at all. When I could finally sleep the dreams were terrifying. Several time I ‘fought’ with people that cut me off while driving. I became a ‘fighter’ but only while dreaming. Rest was not restful. I was switched to Stribild and all the problems, like turning a switch off, disappeared. Two years later doc switch me over to Stribild’s gentle sister. Genvoya. And that’s where I am..
Stribild/Genvoya . None.
Other types of treatments:
Bactrim until my CD4 climbed over 200. They vaccinated me against many things.. Hep B and C. Pneumonia, tetanus, flu and another vaccination I don’t remember why.
Advice to other members:
Listen to your doctor. Listen to your body. Freshly diagnosed is somewhat common to feel dirty. Tainted. Worthless. But you are not. Unfortunately stigma still exists and that makes some of us to disclose only to a very selected group of friends/family.
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