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Author Topic: Fired my doctor  (Read 1949 times)

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Offline Texland

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Fired my doctor
« on: January 10, 2020, 04:56:48 pm »
My last doctor appointment was a joke.

They started me off with a brand new resident to get my history and see what's been going on. First off, I've been hoarse ever since I had a cold last November. The guy didn't even look at my throat.

Next I told him about the pounding heartbeat I get in my left ear and neck. I was born wih a right bundle branch block, sort of a bad connection in the heart wiring. When my heartbeat is loud, I can heart it skip the occasional beat. He asked if I had ever worn a Holter monitor. Nope, nobody has ever suggested that. It's a take home EKG machine you wear for a day or two. I asked if there was any connection between Biktary and the pounding heartbeat. I've been on Biktarvy since it was in clinical trials. About three months in, I suddenly gained 25 pounds. Since then my weight hasn't changed more that a couple pounds.

Finally, there is a bad disc and wonky vertebra in my lumbar spine. It presses on nerves, sending shooting sparks down my legs into my feet. Resident said "We often see neruopathy in our HIV patients, blah blah blah." My previous doctor know about the spine issue and referred me to a specialist. That guy was more interesting in billing than treatment. I wanted a referral to a different specialist.

Finally the real doctor comes in. Resident tells him about my heartbeat issue. Doc says, "I bet you sleep on your left side." I sad nope. He continued, "When you sleep on your left side, the mattress can transmit the sound of your heartbeat to your ear." I said it happens day or night, standing,sitting or when lying down. He said "You need to stop sleeping on your left side." I asked him about any connection Biktarvy and the banging heartbeat or weight gain. He said no, there's never been a case of either with Biktarvy.

Time to find a new doc.


Offline Mindless

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Re: Fired my doctor
« Reply #1 on: January 10, 2020, 10:48:12 pm »
You donít get it... the weight gain is obviously linked to your sleeping on the left side  ;) ;D

Offline Texland

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Re: Fired my doctor
« Reply #2 on: January 11, 2020, 01:14:30 am »
My goodness, you're right! So sleeping on my right side should let all that extra weight leak out.

Offline MadDog125

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Re: Fired my doctor
« Reply #3 on: January 11, 2020, 08:23:50 am »
Where did you run into this guy?  Like which medical facility and or group.  I've never heard of that kind of tone deaf interaction.  That would mess with anyone's faith.
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24
17APR19, cd4 157, VC <20
24MAY19, cd4 340, VC <20
12AUG19, cd4 304, VC 51
30DEC19, cd4 385, VC <20

Offline leatherman

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Re: Fired my doctor
« Reply #4 on: January 11, 2020, 09:08:31 am »
My last doctor appointment was a joke.
what kind of doctor is this? a general practioner or HIV-related? I ask only because many of your issues sound not-HIV-related.

I've been hoarse ever since I had a cold last November.
the cold that was going on around here in the Carolinas had that effect this year. It took early 3 weeks to get over it (the congestion) and then several weeks till people sounded right again

When my heartbeat is loud, I can heart it skip the occasional beat.
most people don't hear their own heartbeat. You should get that looked into. Perhaps it's pulsatile tinnitus.

Finally, there is a bad disc and wonky vertebra in my lumbar spine. It presses on nerves, sending shooting sparks down my legs into my feet. Resident said "We often see neruopathy in our HIV patients, blah blah blah." My previous doctor know about the spine issue and referred me to a specialist. That guy was more interesting in billing than treatment. I wanted a referral to a different specialist.
residents aren't your regular doctor, nor do they have the time to thoroughly peruse your files. Did this resident see files from your previous doctor? Did you mention your known disc issue? Did you talk about the previous specialist and your reasons for needing a referral to a second specialist? It reads like you were putting a lot of emphasis on a learning resident that was only in for the prelimenary review/exam. Much of that sounds like a discussion for your regular doctor.

I asked him about any connection Biktarvy and the banging heartbeat or weight gain. He said no, there's never been a case of either with Biktarvy.
according to the literature, those are not Biktarvy side effects.

Time to find a new doc.
when your doctor doesn't listen to you or doesn't know what they are talking about, that's always a good time to find another one. Good luck.
leatherman (aka mIkIE)

Offline Gladragsguy

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Re: Fired my doctor
« Reply #5 on: January 12, 2020, 07:46:54 am »
Leatherman is right if this was your HIV/ID doctor you can't go in with a laundry list of non specific symptoms and expect them to be an Oracle. Think of it like going to a heart specialist and presenting them with HIV problems they will not be of much use.

Offline kentfrat1783

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Re: Fired my doctor
« Reply #6 on: January 12, 2020, 09:16:55 am »
Hi,

Are you still with the same doctor but you had a resident first this time?  I've had residents when I've gone to my primary care doctor but they ask first if it's OK for them to examine you. I always set my standards low for those type of residents as they are new and learning.  Many don't know how to connect the dots yet as they are still thinking as a book and not a human yet. 

But I go to a teaching hospital so all of my appointments start with a resident and then the real doctor comes in.  Yes, I do repeat everything but in the end, all of my questions are answered and sometimes referred back to my primary care doctor.  There has also been times at my next appointment they will bring in another specialist to deal with the issues I mentioned before. 

This also goes back to why I switched infectious disease doctors.  I didn't feel like I was getting the care I needed.  it took me a good 9 months (3 visits) to determine that I wasn't' getting what I needed and changed. 

If this was the only bad experience with this doctor, and you had a good experience in the past, I'd give one more chance but tell them you don't want to be seen by the resident.  But if this was just the last straw then find someone that listens to you. 

Either way, in the time being, it would be a good idea to see your primary care doctor to have your heart and back looked at.  Better to get that looked at now than later. 

Take care and wishing you the best.
Kenneth
06/08/2020 - CD4 257 (20%) VL <20
03/17/2020 - CD4 285 (19%) VL 101       (2.00)
09/17/2019 - CD4 218 (16%) VL (?)
06/18/2019 - CD4 173 (16%) VL <20
03/13/2019 - CD4 170 (16%) VL <20
January 2019 - Started Triumeq
12/05/2108 - CD4 174 (18%) VL <20
08/28/2018 - CD4 166 (15%) VL <20
05/08/2018 - CD4 106 (11%) VL <20
03/05/2018 - CD4   90 (10%) VL <20
12/11/2017 - CD4   60 (  8%) VL ?
09/07/2017 - CD4   42 (  6%) VL  54        (1.70)
May 2017 - Started Atripla
05/11/2017 - CD4     2 (  1%) VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Texland

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Re: Fired my doctor
« Reply #7 on: January 13, 2020, 01:45:31 pm »
Thanks for all the answers and support.
This doctor is on e of the top guys in town. He's been treating HIV since the beginning. That may be part of the problem. He is in his 70s now, times have changed in the HIV world. I would still recommend him to someone who just tested positive.

Most of my health issues are related to my age, genetics and other pre-existing conditions. There have been a few things in recent years that aren't as easy to pin down. All standard tests have been run so questions about possible medication side effects are valid.

I don't know how long this resident has been with the doctor. I didn't see him at my last appointment four months ago. Right from the start he was pushing STI tests. Please, details of my sex life would bore a nun. What really irked me was how he completely dismissed my already diagnosed low back problem as 'neuropathy common in people with HIV'. That exact off the cuff diagnosis is why I didn't get my back checked out 20 years ago. Turns out, there is a physical problem that can be treated.

The resident also skipped the basics, listening to the heart and lungs, or looking at my throat after I complained about being hoarse for months.

Bingo, Leatherman, that cold was a real butt-kicker. I didn't get out of the house for three weeks exactly.

The actual doctor is only good for one or two medical complaints per visit. The second he is in the room, he's already trying to get out the door. Anything outside his area (HIV) is referred out to a specialist. That means scheduling another appointment and an hour drive each way. A regular GP who sees patients in their 50s would be able to handle most of my problems.

I would prefer to return to seeing my previous doctor. That will not happen until the office manager goes to prison or is carted away by a torch wielding mob (I'll save that story for another time).

There is a small local clinic much closer to home. I went there when I had that wicked cold last November. The bright shiny new doctor took more time talking to me about overall health and went into a detailed explanation about what a 'right bundle branch block' of the heart is. That was way more than the doctor who diagnosed it said about the condition. She said she wasn't up on most HIV treatment but would be able to see me for general health issues. If I can convince her to refill my Biktary and run the standard labs, I may stick with her.




Offline J.R.E.

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  • Positive since 1985, joined forums 12/03
Re: Fired my doctor
« Reply #8 on: January 13, 2020, 04:13:19 pm »


The resident also skipped the basics, listening to the heart and lungs, or looking at my throat after I complained about being hoarse for months.




There's no excuse for that. Unacceptable !

I just went to my ID Nurse practitioner today.  The first thing she said to me, was,  " I see you had a busy two months"

She was referring to me being in the hospital on Nov 18th, when I thought I was having a heart attack. Which ended up NOT being a heart attack.

She then went over my Primary care's notes, When I had that lousy cold or whatever it was, in December that kept me coughing non-stop for 14 days. She agreed with my primary care doctor, that it may have been a weakened version of the flu.  I did have a flu shot. She looked in my throat.

We then talked about switching HIV meds, ( Which I Did),   listened to my lungs, looked for any swelling in my ankles, checked for any swelling of the lymph nodes, around my neck and armpits,   I then layed on my back, where she probed and pushed around my stomach and mid-section.

She then set me up with an appointment with an nephrologist. Being in my late 60's, and HIV for 35 years, I may be now dealing with Kidney issues. This is the care, I expect  to receive, and I have no complaints.


I hope you get better care  next time around, and that you doctor listens to you.  It's a fact, as we get older, we are experiencing more health issues. Every HIV specialists, or any doctor, should know this, and remember this when their dealing with us older / LTS.

I am much like you, dealing with age related and genetic conditions.


Take care of yourself !  ----Ray



 
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Jim Allen

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Re: Fired my doctor
« Reply #9 on: January 13, 2020, 04:32:27 pm »
Healthcare structure is slightly different here but my two cents

Quote
A regular GP who sees patients in their 50s would be able to handle most of my problems.

A decent solid GP who is open to discussion and willing to learn is worth their weight in gold and the best regular medical support provider to have.

Quote
There is a small local clinic much closer to home. I went there when I had that wicked cold last November. The bright shiny new doctor took more time talking to me about overall health and went into a detailed explanation about what a 'right bundle branch block' of the heart is. That was way more than the doctor who diagnosed it said about the condition. She said she wasn't up on most HIV treatment but would be able to see me for general health issues. If I can convince her to refill my Biktary and run the standard labs, I may stick with her.

Combined with a solid GP this sounds like a decent way to go.

Quote
Doc says, "I bet you sleep on your left side." I sad nope. He continued, "When you sleep on your left side, the mattress can transmit the sound of your heartbeat to your ear."

 ;D my foot if he was not careful could likely transmit into his ass if I was his patient
« Last Edit: January 13, 2020, 04:38:12 pm by Jim Allen »
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Offline Texland

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Re: Fired my doctor
« Reply #10 on: January 16, 2020, 02:00:52 pm »

according to the literature, those are not Biktarvy side effects.


The current edition of Poz has an article about integrase inhibitors causing weight gain. I read something similar a few months ago but haven't been able to find it.

https://www.poz.com/article/integrasedriven-weight-gain

After 18 months, those who switched regimens, compared with the 56 people who remained on their existing regimen, gained more weight (6 pounds versus 1 pound) and gained a greater percentage of their body weight (3.6% versus 0.7%). In addition, when comparing weight gain during the 18 months before the medication switch versus the following 18 months, those who changed regimens gained more weight during the latter period.

For years before I went on Biktarvy, my weight stayed between 175 and 180 pounds.

About the same time that I suddenly gained weight, my hair turned white and then fell out. This was four months into the Biktarvy clinical trial. The doctor didn't know what caused that but was sure that it wasn't Biktarvy. After I shaved my head, my hair grew back in, in a dark silver color. About six months later it started growing in black. It was interesting to see. Now my hair is back to my normal brown color, with a good amount of gray.

Offline Texland

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Re: Fired my doctor
« Reply #11 on: January 16, 2020, 02:16:06 pm »

A decent solid GP who is open to discussion and willing to learn is worth their weight in gold and the best regular medical support provider to have.


I was at the dentist's office (HIV organization dental clinic) a few days ago. One of the people there told me about a new HIV medical clinic that recently opened. My now ex-doctor is in charge. It's the same thing, geared toward people who are recently infected. They emphasize STI testing, drug rehab, assistance finding a place to live. That's fine and good. The medical community needs to recognize that there are folks out there who are in stable situations, HIV positive for decades, who aren't on drugs and having constant random anonymous sex. Times have changed since these doctors were in training on how to treat HIV. There is more to patient care than monitoring viral load and CD4 counts. A patient who has been positive for more than 20 or 30 years will have other things going on with their health.

Offline Jim Allen

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Re: Fired my doctor
« Reply #12 on: January 16, 2020, 02:24:20 pm »
Quote
who aren't having constant random anonymous sex.

Tragic isn't it ... ;D

Joking aside I agree that holistic integrated care including might I mention mental health support is the next stage

Quote
They emphasize STI testing, drug rehab, assistance finding a place to live.

Yes, I do fully understand why primary focus is still on getting people into treatment etc, etc as that's the first hurdle to overcome

Quote
The medical community needs to recognize that there are folks out there who are in stable situations

One word "funding"
« Last Edit: January 16, 2020, 02:33:28 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline leatherman

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Re: Fired my doctor
« Reply #13 on: January 17, 2020, 07:21:46 pm »
There is more to patient care than monitoring viral load and CD4 counts.
speaking of funding, many (if not all) U.S. HIV treatment clinics receive funding from the Ryan White program. HRSA (Human Resources & Services Administration) HAB (HIV/AIDS Bureau) has set a number of performance measures to asset the quality of health care provided for people living with HIV.

these measures include:
HIV Viral Suppression - number/percentage of people virally suppressed (note this is gold standard of treatment, and cd4 count is not a measure)
Prescription of HIV Antiretroviral Therapy - number of people prescribed ARVs
HIV Medical Visit Frequency - number of people with a medical visit every 6 month, with at least 60 days between the last visit, over a 2-year period
Gap in HIV Medical Visits - the number of patients who miss the MVF measure
PCP Prophylaxis - number/percentage of people prescribed propolyaxsis for PCP
Annual Retention in Care

HIV Risk Counseling - counseling people to reduce the transmission of HIV to others
Substance Abuse Screening - basically substance risk counseling
Pneumococcal Vaccination - trust me, no one wants pneumonia

and because STIs are such a major co-infection with HIV
Chlamydia Screening
Gonorrhea Screening
Hepatitis C Screening
Syphilis Screening

so funding drives treatment, and doing well on these performance measures drives not only funding but healthy outcomes for patients - which is the desired outcome of this funded treatment.

A patient who has been positive for more than 20 or 30 years will have other things going on with their health.
so just like the epidemic moved from urban areas to rurals area, so health care itself must adapt to new phases of the epidemic. we are in a period where immediate access to treatment (any treatment!) isn't as needed just to stave off death to a time when HIV truly has become a chronic manageable disease (something touted for years before finally being made true). Next we're entering into a period when death from HIV/AIDS isn't as much of a problem as treating people for HIV and aging issues - something we didn't even dream of two decades ago.
leatherman (aka mIkIE)

Offline guitargal

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Re: Fired my doctor
« Reply #14 on: February 27, 2020, 10:39:10 pm »
Years ago my Dr said to wear sunglasses  when I said I think my eyes are looking a little yellow and felt self conscious in public.

Many never even examined me. Just listen and type, nose in computer.

It is a shame. Patients already feel bad or worried and they are met with arrogance.

Hope you are well.
What a long strange trip it's been

Offline Texland

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Re: Fired my doctor
« Reply #15 on: February 28, 2020, 02:06:09 pm »
Hey guitargal,

It's all about finding the doctor you can work with. Some are good, some are bad. If they treat patients like they are idiots, it's time to move on.

I found a local family practice doctor to handle my general stuff. She said she wasn't trained for HIV management. That's fine, most of my problems are related to other things like age and genetics. I've already been put on blood pressure medication. The last two HIV specialists only commented that my pressure was a little high. This new doctor was appalled that I hadn't been treated for it.

I still have to get an HIV doc. At least I won't have to rely on one to treat all the other stuff.

Offline harleymc

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Re: Fired my doctor
« Reply #16 on: February 28, 2020, 05:13:44 pm »
This is a really whiney thread.

Full of self diagnoses that are wrong. You treat your doctors like idiots and demand they treat you with absolute respect. Respect has to be earned.

Offline Texland

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Re: Fired my doctor
« Reply #17 on: February 28, 2020, 07:06:06 pm »
This is a really whiney thread.

Full of self diagnoses that are wrong. You treat your doctors like idiots and demand they treat you with absolute respect. Respect has to be earned.

Sorry, wrong, try again.

When doctors ignore anything outside their main specialty, it's bad. Every HIV doc in town will say they can manage all your healthcare. That's fine until they start ignoring things like high blood pressure, ruptured discs in the spine, or in one case I know of, appendicitis. Instead they pass off all these symptoms as "this happens to many people with HIV" and don't go any further. Then they say "Your numbers look great, come back in six months!"

After being at this the better part of three decades, I need a regular doc to deal with regular medical issues and an HIV specialist to run the numbers and keep current with medications.


Offline JosephP

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Re: Fired my doctor
« Reply #18 on: March 07, 2020, 08:25:42 pm »
again most people don't hear their own heartbeat. You should get that looked into. Perhaps it's pulsatile tinnitus.

Most true but I am one of those unlucky ones that hears his own heartbeat and I hate it!! It actually happens when I sleep on my left side and, I am sure, has nothing to do with hiv or Biktarvy as it happened before diagnosis. As far back as I can recall in my early teen years!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

 


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