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Author Topic: Introduction  (Read 701 times)

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Offline Texland

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Introduction
« on: August 14, 2019, 04:32:19 pm »

Hey Jim! Here's a brief history for anyone interested. I've been through the ringer a few times and lived to tell the tale.

I tested positive and was diagnosed in June 1992. Back then options involved taking random antibiotics to ward off PCP pneumonia and eventually AZT. I refused both. A few years later some different meds came along. I worked my way through those over the years. The only OI I ever had was CMV retinitis. Finally the meds improved, people who were still alive got better.

These days I'm holed up out in the sticks, away from civilization. I recently started seeing the HIV doc I started with over 25 years ago. Most of my problems now are related to age or genetics.  At this point I may need a "regular" doctor to deal with things not related to HIV.

--forgot to add, I'm currently on Biktarvy, going back to when it was still in trials in the US.

I anybody has questions, please ask.
« Last Edit: August 14, 2019, 04:39:06 pm by Texland »

Offline Jim Allen

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Re: Introduction
« Reply #1 on: August 15, 2019, 10:42:57 am »
Hiya,

Welcome to the forum, glad you are still around to experience some aging issues.  ;)

Best, Jim
HIV 101 - Everything you need to know
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Offline HIVSince1995

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Re: Introduction
« Reply #2 on: August 15, 2019, 12:07:59 pm »
Hey Jim,

Welcome home.

There is so much support on this forum.  Your story is similar to mine but, I still find the experience of every member here valuable. 

I, like many, lurked before I jumped into the forum.

On here, and other forums I've been on, the community is stronger with every member and we need you here.

So, once again, welcome home and thank you for sharing your ESH.
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline leatherman

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Re: Introduction
« Reply #3 on: August 15, 2019, 02:34:33 pm »
welcome

antibiotics to ward off PCP pneumonia and eventually AZT. I refused both.
oh, I swear by bactrim. after surviving PCP twice, I took bactrim for almost 10 yrs. But yeah, AZT. ugh. good call. ;) I quit sustiva after 9 months and wish I had "refused" it sooner.

I recently started seeing the HIV doc I started with over 25 years ago.
i don't miss my doc from 25 yrs ago at all. but, even though I have a great doc now, I'd love to have my old doctor from 15 yrs ago back again. But I moved 500 miles away, so that's not his fault. LOL
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Texland

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Re: Introduction
« Reply #4 on: August 15, 2019, 05:02:48 pm »
The doctor who tried to prescribe AZT was a real treat. When I told her I wouldn't take it, she started screaming at me. Finally she said she would never see me again. She was right, I never went back to that awful clinic. It was usually staffed by whatever doctors they could round up. About half of them were drunk.

Crazy times.

Offline HIVSince1995

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Re: Introduction
« Reply #5 on: August 18, 2019, 02:37:51 pm »
The doctor who tried to prescribe AZT was a real treat. When I told her I wouldn't take it, she started screaming at me. Finally she said she would never see me again. She was right, I never went back to that awful clinic. It was usually staffed by whatever doctors they could round up. About half of them were drunk.

Crazy times.

Hey @Texland,

Yikes, a doctor that screams at a patient for telling the truth.  I think every hair on my body stood on end when I read what you posted.

I try to remember that doctors are people.  Even more so, they are people whose advice is frequently ignored or to whose patients outright lie to them.

I have a saying I use at with my doctors (I think I have way too many doctors), "there are two people I don't lie to - my spiritual advisor and my doctor."

Doctors are skeptical about certain answers patients give and many have a number in their head that they use to modify a patient's answer.  For example, "how many cups of coffee do you have a day?"  If the patient answers by saying, "oh, one or two".  The doctor might increase that number in their head to "three or four".

They do that for a good reason.  Many patients simply don't tell the doctor the truth.

I've noticed that some of the questions my doctors ask have changed a bit in an attempt to get a more realistic answer.  Some examples are, "what did you eat yesterday and what have you eaten so far today?", "what new things are you doing for fun or relaxation?".  It might seem silly but, asking a patient if they are eating well and getting a yes as an answer isn't as accurate.

The opposite works for me with my doctors.  I tell them right up front that I'm not going to sugarcoat the truth. 

I had one doctor who found a rub-sore on my penis during a routine "turn your head and cough exam" and drew blood for a syphilis test.  Normally, he gave me a lab slip and I had blood draws done at LabCorp. 

Yet, for what he was pretty sure was syphilis, he had a protocol that he wanted to follow.  I'd been his patient for years and had never failed to do a blood draw nor had I failed to take a medication I had agreed to take but, for this, he drew the blood himself and wanted to treat me with an intermuscular injection of 2.4 million units of slow-releasing Bicillin. 

His logic was that pretty solid.  Since syphilis is a reportable condition once the lab work came back positive, he'd be able to report that I was already treated.  That way, the county health department would leave me alone.  Also, even though my doctor told me that oral penicillin is equally effective in treating syphilis, the preferred treatment was the injection in the butt cheek.  That way, there was no followup needed and the county health department wouldn't do a follow-through my treatment to make sure I was taking the pills.

I refused the injection and said I'd start the pills as soon as the pharmacy filled the prescription.  I also said that I believed the sore was a rub-sore and not syphilis but, that I'd take the pills until the lab results came back.

He wasn't happy but, he didn't yell at me the way your doctor did. 

He tried a few ways to break through my refusal.  I reminded him that I'd been seeing him for a long time, that I had a history of following instructions and that if I wasn't going to take a pill or was being bad at following a recommendation I always told him the truth.

The  RPR (Syphilis Test) takes about 3 days or less for the results to come back.  So, I suggested that we just wait for the test results and that I'd fill a prescription for the pills if the test was positive.

Finally, I had to tell him that the last intermuscular injection I'd had in the butt was when I was 10 years old and that it was one of the most traumatic experiences I remember from childhood.  I had sepsis and was in the hospital.  They didn't have all the choices for antibiotics that that do today.  So, twice a day for 10 days they'd been injecting my butt with slow-release penicillin.  I told my mom and the nurses that I was done with the injections and that they should get the doctor to order pills instead.   I kept asking if they'd done that and the nurses told me "not yet".  So, just before it was time to get the next injection, I left my room and hid behind the door in the pediatric day room.  Apparently, I wasn't the first 10 years old to come up with such a genius plan as they found me almost right away.  I refused to come out from behind the door.  So, they went and got a total of four nurses to pick me up and take me back to my bed.  With me face down and four nurses holding my arms and legs, they gave me the shot.

They must have thought the battle was over because once the shot was in my tushy, they all let go.   However, I wasn't done resisting and my leg came up and hit one of the nurses in the face. 

I didn't know what had happened.  All I saw was the four nurses leaving the room quickly.  I was one pissed off little kid and flipped over still screaming.  Nobody was there to scream at but, that didn't calm me down at all.

Later, I found out I'd hurt the nurse pretty badly.  I hadn't meant to hurt anyone.  I couldn't see what I'd done as my face was being pushed into the pillow while they were pinning me down to give me the shot.

Both the charge nurse and my mom tried to explain to me what I'd done wrong and get me to apologize.  Today, I am sorry I hurt a nurse just doing her job but, at the moment I wasn't sure what I'd done wrong and was still saying that I wouldn't take the next injection.

Amazingly, with me ready to hide again (and find a better spot) when the next shot was almost due, I was told I'd be getting a pill instead of the shot.

Back to the rub-sore, the doctor agreed to hold off on treatment, but said he'd still prefer the shot over the pills because the health department would phone me twice a day to confirm I'd taken the pills, pop in for surprise inspections, count the pills in my bottle and even do observed doses where they watched me take the pills.  Overall, he said the shot was just way easier than the pills.

The point is that doctors should listen to their patients.  Sometimes, the best medical advice will go completely ignored by the patient.  A doctor will refer to this as "non-compliance".   When, in fact, it's just that the doctor didn't listen to the patient or that the patient told the doctor, "yes dear," when the patient had no intention of doing what the doctor said.

That AZT has a long history of side effects patients can't tolerate is without a doubt.  Even before effective three drub HIV HAART treatment when AZT was the only ARV available, doctors knew that it both made patents feel terrible and that it didn't work (or at least that it didn't work for very long).
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline Texland

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Re: Introduction
« Reply #6 on: August 21, 2019, 01:18:21 pm »
Interesting, the last few years at my former doctor, any symptom under the sun was grounds for a syphilis test. Flu? RPR test. e-Coli from bad Romaine? RPR test. That was a good one. My partner and I had the exact same symptoms. He went to the VA. The nurse there said they were seeing at least 40 patients a day with e-Coli infections from bad lettuce. They did blood and urine cultures, he was diagnosed with a kidney infection. I saw the nurse practitioner at my doc's office. She called back a few days later and said it might be my prostate and that my syphilis test was negative.

I'm not a fan of injections in the butt. Two different times the same nurse hit my sciatic nerve. That is a level of pain off the charts.

As far as AZT, there was a regular group that met in Austin back in the early days. Most of it was comparing symptoms, occasionally there was a doctor or other medical person to answer questions in an informal setting. A pharmacist explained how AZT worked on the human body, careful to not endorse or disparage the drug.
The people who immediately started on AZT declined quickly, regardless of where they were medically. Some, like me, refused to take it. Over the years since then, I've only seen a few people from that group. None of them ever took AZT.


 


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