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Author Topic: My first doc  (Read 3689 times)

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Offline wtfimpoz

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My first doc
« on: June 30, 2010, 03:12:37 PM »
Recently infected and recently diagnosed with my first doc appointment in about two weeks.  He is an infectious disease doc but not an HIV specialist.  There is not an HIV specialist in my city covered by my insurance but there is one in a city an hour away that I normally visit weekly.  My case worker at the aids service org says I'm fine with the infectious disease doc I've chosen but I'm worried that he hasn't chosen it as a specialty.  Should I just see the non HIV specialist in my city or try to get in with the guy an hour away?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Inchlingblue

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Re: My first doc
« Reply #1 on: June 30, 2010, 04:05:50 PM »
ID specialists could be fine. Have you tried searching on www.aahivm.org ?

Offline wtfimpoz

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Re: My first doc
« Reply #2 on: June 30, 2010, 04:46:03 PM »
Spent a few hours cross referencing the list aahivm provided with the id docs my insurance provided.  No matches :(
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline leatherman

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Re: My first doc
« Reply #3 on: June 30, 2010, 05:00:39 PM »
My case worker at the aids service org says I'm fine with the infectious disease doc I've chosen but I'm worried that he hasn't chosen it as a specialty. 
Just like for anyone else, your health care needs to be answered by you and your doctor. If you allow your health care to be at least 1/3 your own personal research and knowledge, and 2/3 the knowledge and experience of your doctor, you should have good healthcare.

in nearly 20 yrs, my 4 doctors have all been ID docs, nary an HIV specialist among them. Three times I've been able to inform my doctors about an upcoming new med or change in dosage; and twice my doctors have been able to tell me about a change in meds that could help or an upcoming new treatment.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline mecch

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Re: My first doc
« Reply #4 on: June 30, 2010, 05:18:49 PM »
HIV is an infectious disease and I think you should give the convenient, in your city, doc a chance and see if the relationship works.  ;D
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Jayad

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Re: My first doc
« Reply #5 on: July 01, 2010, 12:55:56 AM »
I am a newbie when it comes to this, but I was told as long as he or she is a member of the Infectious Disease Society of America then you are fine.  Also make sure he or she has dealt with over 50 HIV/AIDS patients.
April 21, 2010-Tested Positive
May 26, 2010-CD4-692 (39%) VL 17100. No Meds.
September 8, 2010-CD4-551 (37%) VL 10241 Still no Meds
Found to have resistance to Videx, Rescriptor, Sustiva, Viramune, Viracept.
December 1, 2010-CD4-476 (34%) VL 38000.
December 5, 2010-Started Combivir.
January 13, 2011-No CD4 Count Done. VL 190!!!!!!
January 15, 2011-Started Viread and Intelence
Feb 15, 2011-Undetectable!!!
April 15, 2011-CD4 898 (43.4%) U/D

Offline wtfimpoz

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Re: My first doc
« Reply #6 on: July 01, 2010, 02:49:36 AM »
Who says fifty is the golden number?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline hotpuppy

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Re: My first doc
« Reply #7 on: July 03, 2010, 05:02:24 AM »
Let me recast this in a different light.

Let's say you run someone over with your car.  You know you need an Attorney.  In your town there is one who just got his degree last week and can take the case..  An hour away is one who specializes in defending cases like yours.  Also in your town is someone who does general liability, but has done 1 or 2 of these cases.

Who are you going to hire?  Assume money is not an issue with the 3 attorneys.

I would hire the one who specializes in your type of case, regardless of the hour drive.  Always get the best advice you can afford and have access to.  Period.  With HIV your life depends on it.

An ID doc can treat HIV.  But you want someone who's passion is HIV.  Someone who reads journals, attends conferences and is passionate about helping people with HIV.  An ID doc who doesn't specialize in HIV may not know which meds work best and may prescribe effective, but older meds that have side effects you would rather avoid.  Just ask some Long Termers about side effects..... it aint pretty.   I have a friend who was diagnosed in 2000 and his doc put him on older meds because he didn't know any better.

Someone who is immersed in HIV care will be alert for side effects and what to do about them.  By the way, the analysis breaks down like this:
1. Evaluate numbers
2. Go on meds either (As soon as possible) (when numbers drop)
3. Monitor
4. Adjust to maintain 2.

It's critical that you be comfortable with your doctor and honest.  Telling him you don't eat ass when you love to have your tongue in your boyfriends butt isn't helping when you have a cough and he can't figure out why ass bacteria is in your throat.  He needs to know the good, bad, and the ugly.  You need to be comfortable telling him or her and have a reasonable expectation not to be judged.  If you are less honest he may overprescribe thinking something is horribly wrong with you when the reality is your tongue did a little dance and made some new friends.  that's different and is what I term an "occupational hazard"   ;D

I personally suggest that you use the first visit to interview your doc.  I would ask him:
1) How much experience do you have treating: HIV, AIDS, related conditions?
1a) How many HIV Positive patients are you currently seeing?
2) How much continuing education for HIV have you taken in the last 12 months? 3 years?
3) If you were HIV Positive, would you come to yourself?  If not, who would you go to? 
4) Are you comfortable with Gay men and their lifestyle?  (anything other than a sure is cause for concern)
5) What do you like to treat? i.e. what are you passionate about.

You may preface by saying that quality of care is important to you and you want to make sure that this is a good fit for him and for you.  I would also add that you mean no disrespect by any of these questions.  Some doctors have a "God complex" and you don't want to burn any bridges or offend any personalities.  In my opinion, a good Doctor will appreciate you taking the time to make sure he's the right Doctor. 

I have no problem saying that I don't like certain doctors in Houston.  Would I see them?  um, in the ER sure.  Routine practice?  Are you smokin crack?  Don't you know that's illegal and bad for you?  (suspend judgement)  When I used to go to the ASO clinic I came down with an STD one time.  My doc was out of town, so I saw this other female doc.  During treatment she asked how many partners I had had in the past month.  I told her 6 and she proceeded to scold me.  Now in my opinion, partner is anyone I engage in activity with that results in orgasm.  This includes JO and Oral.  I would probably stop her if she did that to me today and tell her, "Excuse me but I'm hear for the treatment, not the lecture."  I might also make her be more specific.  At the time I simply bit my tongue and then proceeded to "deal" with the morality police who came in to the room to lecture me about safe sex.  The assumption is that I'm not playing safe if I have an STD.  Okay, point taken, but I don't suck latex.  I then had to "educate" the outreach person because she didn't know what serosorting is.  UGH!  4th Largest city, with the most rednecks per square mile!  (resume judgement)   :D 
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline mecch

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Re: My first doc
« Reply #8 on: July 03, 2010, 08:48:51 AM »
I am not convinced that recently infected people REQUIRE a dedicated HIV specialist to manage their care. It seems to me an experienced infectious disease specialist with some HIV experience to boot could do it quite well. 2010, theres a lot of knowledge available about HIV, and very effective treatments.

Of course in a perfect world we would all have incredibly knowledgeable specialists for every challenge in our lives.

These are tradeoffs an individual has to evaluate in his own life.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wtfimpoz

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Re: My first doc
« Reply #9 on: July 03, 2010, 10:44:36 AM »
Thanks for the insight everyone!  My first reaction is to go with hotpuppy here, but upon more thorough consideration, I'm not really sure if the current trend in medical vogue, as delivered by a "HIV specialist", is really whats going to benefit me.  As near as I can tell, it was medical vogue that told us we should wait until people's cd4 levels dropped below 200 to start treatment. it was medical vogue which introduced brilliant schemes like "treatment holidays" which only seem to have made things worse, and it is medical vogue which told me that I'd be fine "as long as I use a condom, and that this is a really hard disease to contract".  The more I think about it, the more I'm convinced that as long as my ID specialist is reasonably well versed in HIV treatment, I should probably stick with the more "tried and true" treatments I'm likely to get from someone whose treatment paradigms are shaped by standard practice, and not whatever the latest three studies from the past 9 months suggest.  Thanks to those who suggested that I make sure he is "experienced" (in treating HIV) and comfortable with my sexuality.  Those are two things that I might have taken for granted until it was too late.

09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Billy B

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Re: My first doc
« Reply #10 on: July 03, 2010, 11:16:05 AM »
Thanks for the insight everyone!  My first reaction is to go with hotpuppy here, but upon more thorough consideration, I'm not really sure if the current trend in medical vogue, as delivered by a "HIV specialist", is really whats going to benefit me.  As near as I can tell, it was medical vogue that told us we should wait until people's cd4 levels dropped below 200 to start treatment. it was medical vogue which introduced brilliant schemes like "treatment holidays" which only seem to have made things worse, and it is medical vogue which told me that I'd be fine "as long as I use a condom, and that this is a really hard disease to contract".  The more I think about it, the more I'm convinced that as long as my ID specialist is reasonably well versed in HIV treatment, I should probably stick with the more "tried and true" treatments I'm likely to get from someone whose treatment paradigms are shaped by standard practice, and not whatever the latest three studies from the past 9 months suggest.  Thanks to those who suggested that I make sure he is "experienced" (in treating HIV) and comfortable with my sexuality.  Those are two things that I might have taken for granted until it was too late.



I drive 100 miles to see my HIV/ID specialist. There is an ID doctor 30 miles away, but people I know that go to him just don't seem to get the same level of care that I do. Granted my doctor is at a large teaching university, but my labs are back in one week, he is on top of all new meds and concepts because they are running trials, and my phone calls are always returned with in an hour. He handed out some of the first ATZ in North Carolina so he has many many years experience.
My friends that go to the local doctor wait two weeks for labs and most of the time two days for a phone call.
I know this is not always the case with all smaller local clinics, but it is true in this case and my health is my biggest concern at this time.
Peace
Billy
« Last Edit: July 03, 2010, 01:11:27 PM by Billy B »
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline hotpuppy

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Re: My first doc
« Reply #11 on: July 03, 2010, 10:46:37 PM »
Thanks for the insight everyone!  My first reaction is to go with hotpuppy here, but upon more thorough consideration, I'm not really sure if the current trend in medical vogue, as delivered by a "HIV specialist", is really whats going to benefit me.  As near as I can tell, it was medical vogue that told us we should wait until people's cd4 levels dropped below 200 to start treatment. it was medical vogue which introduced brilliant schemes like "treatment holidays" which only seem to have made things worse, and it is medical vogue which told me that I'd be fine "as long as I use a condom, and that this is a really hard disease to contract".  The more I think about it, the more I'm convinced that as long as my ID specialist is reasonably well versed in HIV treatment, I should probably stick with the more "tried and true" treatments I'm likely to get from someone whose treatment paradigms are shaped by standard practice, and not whatever the latest three studies from the past 9 months suggest.  Thanks to those who suggested that I make sure he is "experienced" (in treating HIV) and comfortable with my sexuality.  Those are two things that I might have taken for granted until it was too late.



Okay.... don't read my comments literally... :)  Do take this to heart though:
You want a doctor you are totally comfortable with who is professional, knowledgeable, and up to date on HIV treatment. 
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline wtfimpoz

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Re: My first doc
« Reply #12 on: July 12, 2010, 09:38:26 PM »
Well, I had my first ID appointment.  He informed me that I'll be living "another 45 or 50 years".  Honestly, a bit longer than I'd ever wanted to, but far be it for me to look a gift horse in the mouth at this point ;). His response to my questions about HIV cognitive decline and AIDS-dementia were a lot less reassuring..."the drugs now are really, really effective" sounded a lot like "I have no freaking idea". I'd really rather not be alive for 50 years if I'm not able to tie my shoes after 20.  How much of that is scientific ambiguity versus him not wanting to scare me vs ignorance of the subject, I really can't discern. He had a really odd way of communicating, so I'm not sure that he said what he wanted to, or if I in my hysteria I interpereted it as worse than he meant.  I'm going to probe a bit deeper in the future.  Overally, I was highly impressed with his competence.   Its going to take a an eternity to get my resistance tests back...like 6 weeks or something godawful, but  apparently I'll have my viral load and CD4 in a week.  Overall, not as profound as I was expecting.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline phildinftlaudy

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Re: My first doc
« Reply #13 on: July 12, 2010, 09:43:54 PM »
Well, I had my first ID appointment.  He informed me that I'll be living "another 45 or 50 years".  Honestly, a bit longer than I'd ever wanted to, but far be it for me to look a gift horse in the mouth at this point ;). His response to my questions about HIV cognitive decline and AIDS-dementia were a lot less reassuring..."the drugs now are really, really effective" sounded a lot like "I have no freaking idea". I'd really rather not be alive for 50 years if I'm not able to tie my shoes after 20.  How much of that is scientific ambiguity versus him not wanting to scare me vs ignorance of the subject, I really can't discern. He had a really odd way of communicating, so I'm not sure that he said what he wanted to, or if I in my hysteria I interpereted it as worse than he meant.  I'm going to probe a bit deeper in the future.  Overally, I was highly impressed with his competence.   Its going to take a an eternity to get my resistance tests back...like 6 weeks or something godawful, but  apparently I'll have my viral load and CD4 in a week.  Overall, not as profound as I was expecting.
Hey wtfimpoz:  Glad your first visit went well (or so it appears)  -- Couldn't help but wonder when you he told you that you would live another 45-50 years if his name wasn't Dr. Rev.   ;D   
But, glad it went well and that you seem to have a doc who is know ledgable.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline wtfimpoz

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Re: My first doc
« Reply #14 on: July 13, 2010, 01:07:57 PM »
Hey wtfimpoz:  Glad your first visit went well (or so it appears)  -- Couldn't help but wonder when you he told you that you would live another 45-50 years if his name wasn't Dr. Rev.   ;D   
But, glad it went well and that you seem to have a doc who is know ledgable.

Yeah, sounded a little overly-optimistic to me too, but the much quoted 40 year projection is based on current meds, so it doesn't seem completely optimisitc to assume minor advances in treatment will push my lifespan back a little.  the 25 years or whatever they project in the American study seems a little too pessimistic, especially since the disease was caught early.  Of cours, the length of my life is kinda immaterail compared to the quality. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline hotpuppy

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Re: My first doc
« Reply #15 on: July 13, 2010, 10:10:10 PM »
His response to my questions about HIV cognitive decline and AIDS-dementia were a lot less reassuring..."the drugs now are really, really effective" sounded a lot like "I have no freaking idea". I'd really rather not be alive for 50 years if I'm not able to tie my shoes after 20.  How much of that is scientific ambiguity versus him not wanting to scare me vs ignorance of the subject, I really can't discern.

Do you see a silver dollar or a scorpion when you imagine what's in the dark under a rock?  Alzheimers has a better chance then AIDS dimensia of getting you.  For one thing, it's highly unlikely that you have AIDS.  You are simply HIV positive, and in case you still haven't read the lessons... HIV is the virus that causes AIDS.  AIDS diagnosis depends on a number of factors, and you really need to go through the lessons if you don't know what these things are.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline wtfimpoz

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Re: My first doc
« Reply #16 on: July 14, 2010, 12:52:50 AM »
Do you see a silver dollar or a scorpion when you imagine what's in the dark under a rock?  Alzheimers has a better chance then AIDS dimensia of getting you.  For one thing, it's highly unlikely that you have AIDS.  You are simply HIV positive, and in case you still haven't read the lessons... HIV is the virus that causes AIDS.  AIDS diagnosis depends on a number of factors, and you really need to go through the lessons if you don't know what these things are.

Yes, but cognitive decline is sometimes so severe as to render its victims illiterate.  Almost as bad as dementia.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline hotpuppy

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Re: My first doc
« Reply #17 on: July 14, 2010, 11:50:41 AM »
Yes, but cognitive decline is sometimes so severe as to render its victims illiterate.  Almost as bad as dementia.

Look, I can't think of a gentle way to put this. 

First it's use it or lose it.....

Second, are you feeling mentally diminished today?  Have you checked?  If the answer is no then I suggest you celebrate.  You've been blessed with another day of opportunity.

In 3 hours you may go to the bank, and some rabid criminal may blow your brains out in the process of robbing the place.  You may be unlucky enough to survive with limited mental capacity for the rest of your now un-natural life.  It would be disturbing if you organized your day around this real but unlikely risk of going to the bank.  It's equally disturbing that less than 180 days after becoming infected you are worrying about something that occurs much much later in the course of the disease to a small percentage of the infected population.  For all we know AZT causes brain rot.... which is not what I'm saying.  What I am saying is that we don't know exactly what causes brain rot or we would be doing our best to avoid it.  So, you have to take you chances and enjoy what you have.  If you obsess about disability and death you will hasten your arrival at those destinations.

The human mind is incredibly powerful.  Where you look is where you go.  It's one of the first things we are taught when learning to float in one place while diving.  If you look up you will go up.. If you look down, you will go down.  Therefore it is important to be aware of where you direct your mind's focus. 

In HIV if you focus on enjoying life you will likely enjoy it more than if you do not. 

I can't promise you that it will work for you, but it has worked for me.  Before becoming positive I would work before play.  I now will go play if I can put off the work until later.  Why?  Because I need to play while I can.  There may not be a tomorrow.  It doesn't mean that I don't enjoy working or don't work hard.  I do both.  I just realize that life is precious.  I work to support my lifestyle and interests.... not the other way around.

I hope this helps and doesn't come across as a tongue lashing... but have you ever heard the story about the boy who cried wolf?  Gee I'm infected, so what about dimensia is kinda similar.  It might be more appropriate to go, Gee I'm infected, wonder if my virus is resistant to anything.  I'm just sayin....
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

 


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