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Author Topic: Another Question From A Newbie - The Dr & Me  (Read 1982 times)

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Offline next2u

  • Member
  • Posts: 1,762
Another Question From A Newbie - The Dr & Me
« on: January 31, 2008, 12:45:48 AM »
so i saw my id doc today for the second time. he reiterated some info from before (no new tests) and said i looked healthy. he read off some random questions (assessing if i had hiv induced whatever) and then did a physical exam. i asked him a couple questions about meds, trends, trajectory, and viral loads. now i know there are some experts in here so if you have a second shed some light on the stuff he told me.

1. because i am not on meds i do not need viral load testing (i had them done anyway)
2. untreated, a poz person loses about 60 tcells a year
3. my 2nd test would be used to establish a baseline (ive heard more than 2 tests are needed)

i asked for a genotype/resistance test and found they had already ordered one. it looks as though i have no resistance at this time. now, i have also heard a person needs to be put on a regimen before resistance testing will produce results. any input?

my doc also gave me my cd4 percentage - 41%. i'm kinda pissed that this information was floating around and i didn't have access to it sooner. i wanted to tell him to give me a copy of everything in his little folder since it pertained to my body and he wasn't forthcoming with the information.

as our meds conversation progressed (must have been 7 minutes by now) he got up, left the room and retrieved a pamphlet. upon returning he coyly left the door open (guess it was time to go) and ended our session about 2 minutes later. i was kinda pissed cause my car had broke down on my way to the hospital and then the fuckers increased my copay. not to mention they billed me for a missed appt that they didnt even call to remind me about.

i dont know, i was just hoping for a resource with a firm stance on something. i asked him about starting meds early, he said that was good, he'd put me on them whenever i want. next i asked about the side effects, he acknowledged there were some. then i asked him about the new drug classes and protease inhibitors. he gave me some simple analogy and left it at that. is this guy shortchanging me or am i expecting too much? i wanted more of a dialogue and to debate the pros and cons of my options. i'm reading up on hiv little by little, but i swear it's like going down the rabbit's hole. the more information i get, the more i realize there's a shitload more of information where that came from!

anyhow, thanks for reading this rant. i am anxiously awaiting my next set of labs and pondering replacing my id doc. he's nice and seems informed, but i think something is amiss.
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Smoothstone

  • Member
  • Posts: 96
Re: Another Question From A Newbie - The Dr & Me
« Reply #1 on: January 31, 2008, 02:04:22 AM »
In California patients have a right to a copy of their bloodwork. I routinely request it from the nurse or receptionist. Its an automatic right. I dont bother the doctor with that request.  No explanations needed, just the request.  "For my file". It may be helpful overtime whether you stay with your current doc or switch, whether you remain off meds, or start, or switch, or notice a side effect(s). It may help down the road to save/record "stuff" for easy reference. Good luck. Hank 

Offline sacinsc

  • Member
  • Posts: 353
Re: Another Question From A Newbie - The Dr & Me
« Reply #2 on: January 31, 2008, 02:22:02 AM »
Get copies of your lab work. That way you can chart you numbers as you want. There is never any question about me getting labs done. Until now I was there every 6 weeks. I had a  genotype done the first time I had my numbers drawn. Every 6 weeks I had a full battery of numbers done...plus a pee test for other stuff. I can't imagine having done it any other way, I mean I know people do but for me it was the only thing that would make me happy. Now I have been put to going every 3 months because of my latest numbers.

I never really got good baseline numbers because I started crashing fast. My body had been through to much, so I couldn't say one way or the other. I believe though that most others take 3 or 4 draws to get the baseline. I have never heard of a set number of cd4s being lost each year for untreated patients...but I haven't heard otherwise either. Always get your cd4s and VL checked and if I were you I would be going every 6 weeks till you see where the trend is going!

I am thankful I have a doctor who really cares. I go in for a full consultation where we sit and talk for a while about what is going on. Then he examines me and finally they draw the blood and do the pee test. Usually 4 days later he calls me with the results and I come in if I need to. It is a great situation. If your not feeling "loved" by your doctor, maybe see who else is out there.

Good Luck!

Matt
March 07 - Negative
May 07 - Exposed
June 07 - Seroconversion
September 07 - CD4 402 VL 118000 25%
October 07 -     CD4 294 VL 124000 22%
November 07 - Norvir, Triuvada and Reyataz
December 07 -  CD4 355 VL  550 .... guess the meds are working.
January 08 - CD4 446 VL <48 undetectable!
April 08 - CD4 554 VL <48 undetectable!
July 08 - CD4 666 VL <48 undetectable! Hporay...I have devil CD4's

Offline beefbud

  • Member
  • Posts: 117
  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: Another Question From A Newbie - The Dr & Me
« Reply #3 on: January 31, 2008, 04:17:31 AM »
Quote
1. because i am not on meds i do not need viral load testing (i had them done anyway)

This perplexes me....how else do we monitor the need for meds?  Isn't it a combination for Tcells and VL?   Im glad you had it done anyway.
"first impressions are cheap auditions"

Offline SanDiegoMan

  • Member
  • Posts: 5
Re: Another Question From A Newbie - The Dr & Me
« Reply #4 on: January 31, 2008, 04:37:40 AM »
Find a new doctor. I am in sandiego and when I first found out I was infected I had NO insurance. I was told about ryan white and the feedback I got from others on it wasn't all that great. Different opinions on different facilities and levels of service etc. Well I ended up at UCSD and I have to tel you these guys are INCREDIBLE. i was almost sad to leave there once I had private insurance again. The doctors answered any and all questions they could(I ask alot of unanswerable questions in the begining). I always received a copy of everything the Doc. had in the file without even asking. The staff is great, friendly and I can honestly say that the only limit I have on my time with doc or pharmacist is when I feel like we're done. i am not sure where you live but do yourself a favor and find another Doctor or whatever you feel is necessary to get the treatment you deserve and need. Good Luck!!   Steven

Online BT65

  • Global Moderator
  • Member
  • Posts: 9,975
Re: Another Question From A Newbie - The Dr & Me
« Reply #5 on: January 31, 2008, 07:18:05 AM »
Next2u, looking at your numbers, I would not see a reason for you to start on meds right now.  I always have my viral load checked.  In order to determine if you need to start meds, you should look for a downward trend in your numbers over about three tests.  Being that you're newly diagnosed positive, it may take a few times.  I've never heard of someone losing 60 CD4s a year if one is not on meds.  And you don't have to be on meds to have a good genotype done. 

I always ask the lab for copies of my bloodwork. That way I'm not bothering the doctor.  Only you know how you feel about your doc.  If you're dissatisfied, find a new one.  Doctors are different in the amount of time they will spend with patients.  Some doctors are more forthcoming, others more abrupt.  I don't know what you can do about having to pay for the missed appointment.  My doctor's office always calls to remind me; they really don't need to though; I always write it down on my calendar.  Good luck to you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bocker3

  • Member
  • Posts: 3,422
  • You gotta enjoy life......
Re: Another Question From A Newbie - The Dr & Me
« Reply #6 on: January 31, 2008, 07:26:28 AM »
A good relationship between patient and doctor is a partnership.  Both sides have some responsibilities.  Before I would suggest changing doctors, I would suggest a couple of things to you.

1.  Write down your appts -- it's not really their responsibility to remind you -- this is your health.
2.  Ask your doc for a copy of your lab results -- I do this every time and mine walks out and makes a copy for me.  (Not all labs will give you results -- some states have laws stating that only health care providers can be given results)
3.  If there is something happening that you don't understand, don't like, or seems different than you expected -- ASK THE DOCTOR.  Coming here to rant is a great way to relieve anger/stress and get lots of different perspectives, but you really need to be addressing most of these concerns with the doc.  If you don't tell him that you aren't getting what you need from your visits, he may simply assume that you are.

If you do all this and you are still unsatisfied -- then it will likely be time to look for a new one.  Give it a chance and let him know what YOU expect of him -- oh yeah -- and ask him what HE expects of you.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Another Question From A Newbie - The Dr & Me
« Reply #7 on: January 31, 2008, 08:14:54 AM »
now, i have also heard a person needs to be put on a regimen before resistance testing will produce results. any input?

Hi next2u, I found this thread http://forums.poz.com/index.php?topic=10551.0 in IJTP and from what I can gather the above statement is false. Someone chime in if I'm wrong. Perhaps you might be thinking of the resistance tests which can't be run if a patient has a very very low viral load.  ???
« Last Edit: January 31, 2008, 08:32:50 AM by allopathicholistic »

Offline hartiepie

  • Member
  • Posts: 94
Re: Another Question From A Newbie - The Dr & Me
« Reply #8 on: January 31, 2008, 08:50:08 AM »
Mike is right about the partnership of patient and doc. I am lucky enough to have had the same doctor for 22 years. He was my general practitioner before I was sick and before he became an Infectious Disease doc. One the reasons I stay with him is his humor and humility. If he doesn't know something, he'll say so. He always asks me my opinion and will ask if I have researched the topic at hand before giving me suggestions for treatment so I can decide.

Being angry while getting treatment will solve nothing. I try to go to my appointments with an attitude of business so that things get done and questions get answered. I think my doc appreciates that and I do too because it makes it easier to then call back for clarification should I think of something later.

And your records are your own, so ask for copies in a neutral way so you can keep them to review at your leisure.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Another Question From A Newbie - The Dr & Me
« Reply #9 on: January 31, 2008, 09:34:10 AM »
I've never heard of someone losing 60 CD4s a year if one is not on meds. 

I think the 60 CD4s per year is one of those "average progression of disease" statistics.  There's various charts that show the path CD4 counts usually take for fast, average and slow progressors.  Here's one from the ibase guide.

http://www.i-base.info/manual/en/1-8.html



Regards

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline next2u

  • Member
  • Posts: 1,762
Re: Another Question From A Newbie - The Dr & Me
« Reply #10 on: February 04, 2008, 01:49:52 AM »
thank you for the information and feedback.

yeah, my doc is kinda strange. ill give him a few more tries before quitting. next time he tries that door shit ill ask him how many minutes im granted per session or some shit. if you have any suggestions please post.

my friend told me (i know, its not the most reliable source) that resistance testing can be done without a drug regmine being in place. he says the tests have improved and are more sensitive. also, thanks for the info on the tcell decline.

i have 3 drs. 2 work for the man and one is a holistic dr. the holistic dr waits for me to asks questions, does not bat an eye at giving me an hour or more of his time, and seems the most sincere. damnit, why can't my id doc or my gp be more like him. lastly, the quality of hiv care is better at the county clinic than at my hospital. i need to switch dr but dont know how. my id doc's receptionest is a bitch too.

good stuff about the dr -> he's been working with hiv patients for over 20 years and stays abreast of my issues. i want to ask him if he has that specialized hiv certificate. does anyone know what it's called?
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

 


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