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Author Topic: advice?  (Read 451 times)

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Offline arber_B

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advice?
« on: July 20, 2020, 02:09:53 am »
So- I was diagnosed back in October- almost a year, this is so crazy because at times, I still hope it is all mistake. I live in a small town in CA 2 hours away from SF. Thus, I decided to go see an ID doctor there to keep my privacy. I see someone at the UCSF HIV clinic. My doctor is not listening to me. First time this happened was when I told her about the numbness in my limbs, she kept saying this is in my head and its because I am still wrapping my head around the whole thing- I believed her because it does not happen all the time but it comes and goes, so I thought it could be just anxiety.
My next visit which was in November, my numbers were good, CD4 were up, VL was UD, etc. but my liver enzymes were so off. She asked me if I had any sexual activity since last visit and I said no. She told me that those enzymes go up if one is infected with syphilis.t. Even though the first one she ordered came back negative and I told her I had no SEX since the last tests she conducted, she still put the order without me knowing. When I confronted her about it, she said that there is a rise in SF with this and she just added the test. I let it go because whatever.
Lastly, my last VL test came back detectable (28), and she asked me if I skipped a few pills because my number is showing that this might be the case.
I am annoyed that all wrong numbers are somewhat because I did something! Am I overreacting?

Offline Jim Allen

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Re: advice?
« Reply #1 on: July 20, 2020, 04:29:14 am »
Hiya,

Sorry to hear you are having a rough time with the ID doctor. Congrats on remaining UD, 28 is great.

Asking if you skipped meds and had sexual activity seem basic standard questions to me, at least my experince is I get asked this everytime regardless of the results.
Although the VL of 28 should not be an issue, asking if meds where skipped to understand if there is a bigger concern to dicuss is an understandable question I suppose.

Prehaps the issue is not what they are asking but how?

I'm sure if it's asked without any tact these questions can seem intrusive and distrusting. As for adding the test they should have told you. I would presume they did that as an infection could be older or have been missed and plenty of people claim not to have sex yet do.

Have you told them how this makes you feel? Prehaps letting them know about how this makes you feel is the way to go and if things don't improve maybe consider switching doctors.

Jim
« Last Edit: July 20, 2020, 05:16:51 am by Jim Allen »
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Offline Bhall4

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Re: advice?
« Reply #2 on: July 20, 2020, 06:36:31 am »
Pretty much everything I see my provider I am asked ďany change in sexual history from the last visitĒ. Recently, I had more blood work and they added syphilis on also, I just think it being standard.

I am battling my VL, even though it is staying low, still not consistently less than 20 so they always ask have i missed a dose or anything too. 

I donít think your ID means any harm,  maybe just comes off abrasive.

Offline leatherman

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Re: advice?
« Reply #3 on: July 20, 2020, 08:33:03 am »
i think the problem is simply that you're not used to a doctor paying attention to something that you haven't ever had a doctor pay attention to before.

when the USA set up the Ryan White Care Act to provide treatment and medical healthcare to People Living with HIV (and now those living without HIV who might be at risk i.e. those needing PrEP), it included a quality management program to collect data on a set of basic treatment standards, evaluate and act to that data. As a patient advocate I sit in meetings with other patients and providers (doctors, nurse, county and state health dpt, etc) where we take the data collected (all those crazy questions your doctor and the clinic staff ask, like "sexual activity", "adherence", etc), evaluate it, and based on the results offer help to agencies to improve their results - by providing better health care.

Some of the Ryan white measurements we evaluate are:
has the patient been counseled for substance abuse?
has the patient been counseled about HIV risks? (everyone positive should know all the ways to prevent the spread of HIV ;) )
has the patient been tested for syphilis?
has the patient been tested for gonorrhea?
has the patient been tested for chlamydia?
has the patient been tested for TB? (all these STI's and diseases can be co-infections with HIV and also need to be treated)
has the patient been prescribed antiretroviral medications?
has the patient been prescribed prophylaxis medications if cd4<200?
is the patient's viral load undetectable?

these questions are sometimes asked formally and sometimes informally, but either way a doctor should record this information and report the clinic's aggregate data to the Ryan White quality committee.

these questions aren't asked lightly but asked to get a better picture of how to treat you. :) Since HIV is usually sexually transmitted, testing for other STIs is a pretty good idea. Making sure patients know about HIV transmission and prevention methods (if someone is Undetectable for 6 months, they will not transmit HIV. Treatment as Prevention) helps stop HIV from spreading.

(a quick personal story: My husband and I switched to a new doctor a few years ago. He's a GREAT HIV specialist; but at first I was a little put out when he questioned me about my sexual activity by asking if I had other partners than my husband or whether we might have had multiple partners together. Wow! My previous HIV doctor (a dour, straight man hehehe) would have never asked such a thing. :D But my new doctor (who also happens to be a gay man like my husband and I) understands that people (straight or gay) don't always stay monogamous and that outside sexuality activity could put either of us at risk for other STIs)

Knowing the viral load from a patient population at a clinic can show which clinics are providing good health care (the more people undetectable the better the clinic is doing for it's patients) and which might need more state resources or training to improve their services and get more of their patients undetectable.

Unlike having a sore throat (when your doctor will take your temp, look in your mouth, maybe do some blood work, and prescribe you some cough syrup) HIV can be a complicated disease. Patients need to stay adherent to meds and doctors need to be proactive in looking for other issues that are known to be caused by HIV. That means that our doctors need to ask more questions, test for more issues, and track more data. That's why it seems like your doctor is asking more intrusive questions - because treating HIV is a lot different that treating a sore throat.

But I don't mean this situation is the "fault" of patients because they don't know how the system and treating HIV works (though that is certainly a big part of the problem) but it's also an issue of doctors not explaining enough to patients.** I certainly think that patients should learn about their own health problems, but I think if more doctors explained why some of these questions were being asked, and that they were not be asking as "accusations" against a patient, patients would feel better. More peer support (HIV+ patients counseling other HIV+ patients) could certainly help as too often doctors don't have the time (between actually treating patients and trying to track all this data) to adequately educate and offer assurance to all their patients all the time. Also, it's worth keeping in mind, that doctors ask these same questions to all their patients all day long and to them this is just a normal part of trying to give their patients good health care.

Trust me, after 30+ years of HIV treatment, I can't tell you how many times I've answered these same things. Over, and over, and over. LOL

I know this was long but hopefully you understand a little more the reasoning behind your doctor's questions. :)





**(I also wish doctors and the health dept explaining contact tracing better; but that's another issue. LOL BTW, contact tracing is an anonymous way to inform other people that they might have had a risk of HIV, so they can be tested, and treated if necessary, is a timely manner)
leatherman (aka mIkIE)

Offline arber_B

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Re: advice?
« Reply #4 on: July 20, 2020, 11:13:53 am »
Thank you all for your responses. I am trying to give her the benefit of the doubt. And I was okay with her asking about my sexual activity, but when i told her NO and yet she ordered the test, I was shocked. As I said I do not want to overreact, I think I agree with Jim, it is the way she asks not the questions. I guess, had she asked if I ever missed a dose or two would be different. It was just a statement that those who go from VL<20 to above 20 usually miss some doses.
Anyhow, thank you for letting me know what you think!
I am gonna stick with her, especially it has not been a year since this all started and then if things are not better- I will see another specialist.

Offline Bhall4

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Re: advice?
« Reply #5 on: July 20, 2020, 06:38:35 pm »
Well my answer was no also and I still was tested.  But being on a provider side; sometimes we do get told little fibs ☺️

Offline weasel

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Re: advice?
« Reply #6 on: July 21, 2020, 11:25:25 am »


   Hi arber_B ,

                       I have to say if this is how she treats you now it will only get worse.

     I had a VA doctor for 14 years that kept telling me nephropathy was all in my head ,  I have come to the point that my feet feel dead .

     I get annoyed with a doctor that knows me asking if I had sex !

     I have been tested for syphilis many times ........ Unless it comes from over eating I do not have it ... lol 

    Not liking a doctor is bad, see if you can have another .

    I see your point of wanting to be anonymous , but for me the closet doctor is 2 hours away , it has gotten old , but so have I ..  :P

  Good luck with getting doctors to listen , if they have been around awhile they don't !

    BTW , You are Not over reacting , when a doctor treats us with respect and not morons , things go so much better . 

                                                     
                                                                 be well , Carl

  P.S. :  Be careful , when doctors start with " it's in your head " offering pills is not far away ! Don't fall down that path please.
" Live and let Live "

Offline harleymc

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Re: advice?
« Reply #7 on: July 22, 2020, 06:27:50 am »
With the numbness in your limbs have you mapped out the areas of  loss of sedation with a needle?

 


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